Punching the Ticket


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.



Progress in Reverse


The hand on my shoulder should have made my head turn.  Sitting in the booth of that cafe, drinking a cup of tea while trying to write something long overdue, her hand just tight enough to let me know someone was there.  Not hard, no shaking me from my waking dream.  The waitress made no attempt to tug on the headphones I had in.

Most times I sit with my back against a wall.  Some doctor long ago told me it was my way of subconsciously dealing with fear.  If I can see everything coming towards me, I’m not as likely to shift in my seat as often.  My head still tracks every new person, but that’s just paranoia of being recognized at a time when I rather remain anonymous.

“I’ll wrap up the rest of your lunch.”  She’s gotten used to my visits and knows that it has never been about the quality of the food, just my lack of appetite.

The uneven sound that I hear comes from that progressive loss my right ear has been experiencing.  The gift of seizure’s past?

As I touched the pause button, the number of times the track had been played was blinking in the corner.  14 times!  There was no way that was possible.  I’d been sitting for about an hour.  I come on days when my den mother gets her hair done and we both agree that being out is a good thing.  Even if I don’t speak, just doing normal is healthy.

The song last 19 minutes.  266 minutes couldn’t have passed by.  Over four hours listening to the same track?

When my bill came with my doggy bag, part of my answer came from a nice older lady.

“Were you listening to a speech?  I couldn’t help notice that you kept rewinding every few minutes.”

That was the missing piece.  I had been listening to the same section of the song over and over.  Countless times pushing the progress in reverse.  Letting a few words take their grip and overwhelm my thoughts.

Could this be the end? Is this the way I die?
Sitting here alone, no one by my side
I don’t understand, I don’t feel that I deserve this
What did I do wrong? I just don’t understand
I just don’t understand

Now wait a minute man, that’s not how it is
You must be confused, that isn’t who I am
Please don’t be afraid, I would never try to hurt you
This is how we live strange although it seems please try to forgive

A simple guitar starts this section.  It builds to include the rest of the instruments, ending in another of those choruses that I remember learning the parts for years ago when the album came out.  Sitting behind a keyboard, again hitting the rewind function to get the notes down.

Those lyrics mean something to me because they capture the dichotomy that revolves around my thoughts.  One time giving into the depression and another being angry that I have allowed myself to even think that way.  The growing beat and joining instruments gather those emotions better if you hear it rather than just read my words.  Each person brings their own thoughts and takes away their own meaning.

Irony has me wonder if one of these trips out might be the last one.  Face down in my pie is not quite the picture I have in mind, but it makes me think twice some times before leaving the house.  The cancer will win, and most likely not in the manner I chose.  But that’s another argument.

People have told me that the anger isn’t on my sleeve anymore.  Just a sadness that time can only partially heal.

There are still so many things in my head that I want to share.  The selfish part of me that can’t let go of sitting with my daughter arguing about whose music is best tops the list.  I see that spark from my own mother when she hears me talk about what I feel when I listen to certain artists.

There are countless notes to be written.  Sitting in that booth, my mind was captured by just a few and the struggle I have been fighting played out.

Right Now I’m Still Using It.


It’s a weird thing to be asked to donate.  There is a sticker on my driver’s license and paperwork signed multiple times from different hospital stays that back up my request.  But to be sitting in a chair with the very nervous graduate student who was asking, I almost wanted to have some fun with it before agreeing for the millionth time.

My brain will be going to Boston University and their continuing research into traumatic brain injuries.  All of those seizures that occurred last summer are documented.  We know when they started and how long they continued.  Add in my medical records from the two other times in my life when we know my head was smacked during baseball or a car accident, established baseline.

Seeing the Commissioner of Football get on television and talk about how they are hurt because the government didn’t ask their permission to publish results ticks me off.  I get that people should be treated like adults in their choices.  Some might see it as the only way to improve their financial status, others just love the game too much to quit.  Let’s ignore the politics and just acknowledge that getting your head bent around  is going to have lasting effects.

It reminds me of when my grandmother just blindly followed the instructions of her doctor without a single question.  Some might have been age, some that she was a nurse and accustomed to such behavior; I never got it.  I ask question all the time.  Look the stuff up so I ask the right questions for me.  There are things I don’t ask, the answers aren’t important.  Other questions need some direction.

I respect everyone’s choice about what they want to do when they shuffle off this planet.  Religion, politics, just personal choice defines plenty of our world.  There’s a grain of truth to everything we do, regardless of the motivation.

They tell me there is a part of my brain that formed a little differently and the result was my ability to remember everything I see, read, hear.  Not like those people who can pull up a date and tell you the weather, these have to be my experiences in order for this to work.  But if you tell me your story, it becomes part of mine.

These new people in my life have been adjusting to that habit.  One is fascinated, the other worries about how those memories continue to haunt me.  Adults versus teenagers vantage points.  It also is what has caused the friction with other adults, looking for a pattern to emerge that just might not ever occur.  In one case knowing that their own past is something I have internalized to the point where I want the person responsible for their pain to suffer in ways that would get me jailed.

Science is irrefutable to a degree.  There may come a time when research adds to previous theory.  The world is not flat?  At one time the leading people all thought it was, but they also thought we were the center of everything and the sun revolved around us!

Hopefully something about me will lead a person to not have to suffer the type of pain I go through with the cancer.  That has been my hope.  Maybe one other person might go onto live because I let a bunch of researchers play around in my head in a way they can’t right now.  I am still using it!  But thank you for asking again for permission.

That’s the goal, one person having a different outcome.  Give them a chance to do anything.  It’s that simple.

Let the Story Flow


Hopelessly drifting, bathing in beautiful agony
I am endlessly falling lost in this wonderful misery

The dreams that used to come at night don’t anymore.  Life has reached a point where I accept that taking something to help me sleep. To keep the demons at bay, means that those wonderful fantasies of again getting my hand just slightly above the rim of a basketball hoop are gone.  Waking up during those times when the nightmares far outnumbered, covered in sweat and tremors was getting to be too much.

So onto the drugs I went.  The dreams became only those that I could conjure while staring at pictures.  Shapes of clouds as they sailed by a window, other drugs being pumped into me for other reasons.  And maybe the part that had me stalled with getting beyond the moment, people telling me to dream large now.  Later wasn’t an option.

When I have talked to people about my daughter, they don’t know how to advice me about the dreams that ended in a different hospital.  All those plans that still live inside me that want to find a way out.  I’ve seen it over and over with others who have lost their only child, confusion about the future.

Now rather than be the person who only needed to listen, offer a hug; I’ve become the person who needs to voice my thoughts or watch them wither on the vine.

Fortunately the world has become more understanding about people needing to get help.  Whispers in dark corners have become signs waved on the front lawn telling people about the fears.  The downside is that as society changes some people still need to remain silent or tell me to shut it down.

I’ve gotten rid of those people.  If my being uncomfortable watching little girls in their Sunday best bothers you, pray you never understand the mindset I was forced into.

Having left home last year for something mentally stronger, I’ve been fortunate that the family I live with gets it.  And I’m still heartbroken once or twice a year that they understand on the same level I do.  But watching Susie grow through the teenage years has been helpful, and hopeful.  Her friends have been interesting to watch.  Some have seen my name from things in the past, awards from school or her father telling stories about how I watched him when he was younger.

My dreams have shifted to the daylight.  Where they are safe in the exposure the sun brings them.  The fact that I can see a smile and feel it when the world is less than forgiving about other mistakes.

If I had to put a finger on a specific moment, I still go back to seeing ten finger and toes for the first time.  I break down and let that story guide me every time.

Specters and Running Shoes


The first rule of problem solving is to identify the problems.  It is not a simple as that sounds.  Usually in business you can look over income statements and other metrics provided by people from within and sometimes going outside to have a person sit at the other end of a table sheepishly working up the courage to detail the failures.

It’s the same as a person asking for help.  They need to know the most basic part, help is required.  At times the problems are stacked a mile high and seeing over the wall of issues is daunting.  Then finding the right person to help, just as bad.  Ask the wrong person and things could be made worse.  Or someone might use that information to take advantage of you.

I used to teach these methods to graduate students.  Knowing who in any organization might be the best person to get out from under the mounting confusion.  In my family’s business my cousin is that person for me.  He takes care of the daily issues while I can focus on larger issues that affect the long term.

Lately in my personal life I have had a significantly difficult time trusting people to help with even the simplest of things.  Hours trying to identify a single person who could be a sounding board, hours that might have better been spent fixing the concerns.

There are people I trust to handle simple things.  But when it comes to trusting someone with the most important thing, my mental state, I trust no one.  Making a mess of relationships with those around me who just ask if they can listen turns into my knowing I am hurting them by ignoring their request or flatly telling them “I got this!”

Fear of putting myself in a place where I can get hurt more is limiting.  I would have told the students that putting aside ego is the best thing you can do for a business.  The best leaders are ones who can stand in a room and say that they don’t know the solution and could use assistance.  A different viewpoint to countermand the hours spend looking over papers and screens.  A way out of the dark?

With the family business we have screwed some things up.  Any person who can tell you they know the future is full of garbage.  10 year projections, 5 year projections are just guesses.  You can’t rely on them for anything more than an option if you chose all of the right paths.  No business works this way.  Life can’t either.

Years have gone by with me being able to tell you why a decision was made.  That’s the nature of Behavioral Economics.  I might even be able to tell you in a very limited fashion how you might pick a solution from a very narrow set of choices.  Again, just guesses.

I’m having a very difficult time letting go of the past when it comes to people being there.  There is one single thing that paralyzes me, the fear of abandonment.  Someone being there one moment and not the next.  It stems from my teenage years and continues into what is now my 44th year.

For the past week I sit pensively looking out the window hoping for something that I know isn’t going to change unless I do something.  That part of me that scares everyone, being a hardass of epic proportions, pushed back at the wrong time.

Now I don’t know how to fix it.  I hurt someone’s feelings when it would have been better to just admit that I wasn’t feeling well.  That fear of having another person take advantage of my being ill, even when I know this person wouldn’t even if held at gunpoint; it affects too much.

The best I can do for now was send some flower and hope they understand.  They know the history involved, but maybe they just weren’t ready for the reality.  No harm in that, feelings are particularly fickle things.

What is my message?  The future is a complete unknown and that seems to be bothering me more than it used to.  Might be that specter of doctors and their timelines clicking their countdown?  Maybe all that running from the past and stopping to catch my breath finally allowed that ghost to catch up?  Who knows…

I liked it better when fear wasn’t such a constant presence.

Driving I95 South


Putting the phone down and grabbing a sheet of paper to begin the list of what needed to be done today was the priority.  The day started with me volunteering to be the unpaid research assistant for a professor whose work I had found interesting.  My life needed a change and for some reason I picked up the phone on a Thursday morning and hoped he would be in.  30 minutes later my stuff needed to be packed and I needed to be in Florida by the following Monday.

I put both of my parents on a conference call and told them I was leaving, in two days.  That was how long I had to move my life from Boston.  I had handled their moves in the past, so I had experienced this process, but then I had months to accomplish things.

They had only one request, I not drive the entire way by myself.  “Pick up your grandfather outside of Philly and take him with you.”

This was a big ask since I couldn’t stand to be in a room with my grandmother so it had changed the relationship I had with him.  We didn’t speak unless forced to.  It wasn’t either of our finer moments, but families have these issues.  This one just never was resolved.

My car had just enough room for his bag and his 6’4″ frame to sit in.  The rest was filled with what I needed for the next two weeks until the rest of my junk made the trek down Interstate 95.

The silence was horrible.  We had no common interests.  He had said he liked Jazz, which was easy for me to put a couple of CDs in the car to listen to.  Only what he meant was Bluegrass, not the Charlie Parker or Miles Davis I brought.  So that car ride was also made in silence.  The tires and AC being the only sounds until we were south of Virginia.

This drive was new for me.  Spending time with him was new for me.  We were adults, only acting like spoiled children.  It took time for either of us to open up.

It started easy enough because I knew he had traveled these roads before taking his Winnebego around the country after he retired.  I had gone once when I was 12, it didn’t go well.  The fishing was fine, the being left to hike for hours with whomever I could find was great; but there was always my grandmother.  {she’s been dead now for roughly 5 1/2 years and I still can’t forgive her for the names she used to call my brother and I growing up.  Nasty woman picking on 8 year olds!}

I learned a few things during that drive.  Some I knew from talks with my own father, other things I could guess at due to the tones others took.  There were some missing pieces to stories I asked about, details that made sense after hearing another point of view.

By the time we met up with my father, who had decided he needed to fly down and help out, things were normal.  I saw another side I didn’t see at other points.  Three generations sat down and had a beer, which had never happened.  (there is a story about my father, grandfather, and a family friend going to a picnic where no one should have driven home and the basic skill of putting a key in the door was confused by the alcohol involved.  It’s funny now, but no one will ever repeat that process!)

The next day, as my grandfather got ready to leave, the tension covered everything.  He was short, snappy, and just rather unpleasant to talk to.  Some must have been going home to his wife.  Some we all knew had to do with one of my aunts who was a vampire on his time and resources.  He was yelling at me in the car because I didn’t know my way to the airport, which why should I?  I’d lived in town for 24 hours, I didn’t know where to buy food yet!

Things went south quickly.  I called my father from the car to ask him to meet me with the realtor.  My dad knew not to go in the car earlier, he saw something I only learned later.  I bought a place 48 hours after getting into town.  Still own it since by the time I was moving back North the value hadn’t moved and I would have lost money.  Not something an economist could live with.

Living in the South, away from all family and any old friends was necessary.  It came at a time when my live needed a new direction and I grabbed at it like a drowning man.

3 years I spent teaching.  A little college, some autistic kids because I wanted to learn about them, finishing a Master’s Program in 12 months because I had made that the priority not people.  People came later, when I was ready.

Time has softened nothing about my views regarding my dad’s parents.  My grandfather had an excellent reputation with others, one I envy because he worked hard to obtain it.  His name shows up in a few books and his name can get me into a few closed doors simply because I’m his grandson.  I’ve never spoken to anyone other than family about why he acted the way he did with my brother and I.  Most tell me that he was a good man, kind like his own father, and that changed along with my grandmother’s influence.

I would have liked to have known that man.  Driving South gave me a small chance that neither if us could build from.  Too much had happened.

A Phone Call Away


I screwed up.  That’s the polite way of wording that, most times I would use a string of words best left out of civil society.  The pain I caused just a few days ago is going to last much longer than just the hours that have passed since.  100 percent my issue, the fault only resides at my feet and there is nothing that can be done to fix it.  I’ve tried in my head to come up with something that corrects my behavior, but I keep getting lost in my thoughts.

Of course that is what made me act so stupidly…

Last week a friend tried to be there for me during what was an unpleasant experience.  A few sleepless nights followed by days that moved at paces I couldn’t track.  One minute passed into an hour or maybe time was just flowing at different rates I never saw.

But rather than let someone in the door, I kept it closed.  I try not to dwell to much on my ex’s behavior at times, there is no point.  The past is to be studied, but shouldn’t punish someone who wasn’t a part of my life then.

Here’s my joke – Politicians always talk about the 3 a.m. phone call they always are ready for, my ex was not that person.  It hurt knowing that one day, when I was laying in the hospital I called her to let her know what had happened, she had to be told what to do.  I opted for her staying away since normal reaction should have been dropping the phone and just being there.  Having to beg someone isn’t my thing.

I once walked out on a date because a friend was concerned about something going on with her family.  I drove an hour just to sit on the floor and listen.  That was what my parents taught me, you stop what you are doing and get where you need to be.  Don’t wait to be asked, just go.  Even when there is nothing to be done.  Some times it only matters that you be there.  [I once sat in a plastic chair in the emergency room waiting for the former mother-in-law, just because it was the right thing to do.  They never understood that, even made fun of me for it.  My mother was irate when they later made fun of me for those types of things!]

So fast forward, I didn’t pick up the phone and ask anyone for help.  Didn’t use my words when the rest of the room could see I was in pain.  I closed the door and locked it.  Put a chair against it and ensured no one could hurt me.  Other than myself.

I know this woman wants to be there.  She has said it over and over again.  “Just let me listen.”  “Let me get you a drink when you can’t.”  I could continue with endless examples, I’ve heard every word.  But still the phone sat on the table.

Letting people in has been hard.  It was easier with her daughter because she’s my niece’s best friend.  She’s around alot.  And never would I allow myself to hurt these girls, under no set of circumstances.  I’d rather spend time with my ex’s mother on a desert island!

Yesterday was bad because I couldn’t let it go.  Sitting, watching outside as I tried to navigate out of this stupid blindspot, the day was lost.  By bedtime I hurt all over.  Not a portion of me was happy and that only makes dealing with the physical side more difficult.  I still didn’t pick up the phone and apologize.

The sad part is I know she would have forgiven me.  But I’m still learning to forgive myself for things I never could control.  And the ones I can control become a giant mess when I don’t handle them.

Why I’m letting the ex control today is beyond me.  Here are people willing to drop everything to just let me know I still have some value in the world and my reaction is less than spectacular.  Yet they try the next day to let me know, hoping the sun brought light into my world, that they are still trying.

I hate myself during those times.

Why don’t they hate me?