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.

 

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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….

Impact

Locked

Trying to turn a negative into something positive has been a challenge.  Finding the right activity, it was almost two years to the day before it jumped into my lap and screamed “This is what you should do!”  Someone had once tried to get me to work with small children, tutoring them in reading, but it hurt too much.  It wasn’t the right thing for me.  But now I have been able to dig into something that meets my requirements and also allows for a lasting tribute to many people.

The gift this group gave me was the foundation for learning to walk again.  To be able to get out of bed without immediately wishing I had just pulled the covers back over myself.  Running on what can generously be called a shoe-string budget, they make things work for far too many people who have sought them out.

Groups for helping people deal with the loss of children don’t advertise on television or a magazine.  It’s word of mouth delivered by some therapist or nurse who has seen that look before.  A parent who overhears about a loss and offers to listen, telling them about these others who have wandered in the darkness.

So I have been writing grant proposals for them.  A couple of thousand dollars would keep them going for years.  It’s that much of a self-help approach, helping themselves by talking to others.  Possibly picking up the registration fees for some conference held where people who have experienced the same gather to offer a light to follow.

The worst part has been getting people to write about the impact this group has had on their lives.  It means sitting down and exposing a very raw nerve.  Giving details that might not have been exposed in quite some time.  Having to relive a small portion of that pain in a narrative that others are going to judge.  In some ways it feels cruel, in others cathartic.

I keep being reminded of something from the Disney Channel, about how people change people.  This is supposed to be a good thing.  Their message is that helping others makes us better in small ways.  It’s also the voice that keeps me trying to build some lasting memorial to my daughter that will benefit the most people.  And since I do have all this training in economics, plowing through flowcharts and budget projections gives me a chance to do something towards my goal.

I’ve planted trees, paid for trees in other locations, sent up Japanese lanterns because we were celebrating a birthday.  All those cute things, but none will have the outreach that this potentially could.  If even one other person gains some help from this, all the time will be worth it.

It doesn’t even matter if anyone knows that I had anything to do with it.  Having written the grant and also an impact statement seems odd.  The first company that contacted me had lots of questions and it was good to talk about my daughter in a positive light.  It’s not easy allowing yourself to use the memory of someone to raise funds for others, but it also helps the people you are asking understand.  It’s not some faceless person who is taking a cut, rather you get someone like me who gets emotional and doesn’t try to hide it.

Locking away my daughter would deprive the world of what she could accomplish.  Her life changed me and maybe she will be able to help change someone else’s world so that they can do the same for another.  One person, making tiny steps, helping another.  It’s the best I can offer.

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.

Can You Repeat That?

For a very long time, what felt like forever, the doctors kept changing my medication.  The seizures were happening at a rate they couldn’t control.  A few of those lovely machines they had wired to me could give a little warning to someone in the room but I was already lost for a few hours by that point.  In the end, after poking around the side of my head we found a balance, but the cost was something I wish I fully understood before agreeing.

Tonight a few hundred people will gather and sit in their chairs waiting for the band to take their positions.  Five guys are going to play for a little over two hours their latest album.  It’s been met with mixed reviews from the public, but the “experts” have said they enjoyed the differing direction.

While I was in the stages of the seizures I wasn’t sure I would even make it to the point where I would ever hear the album.  Four months is a long time when things are up in the air.  Add in the notion of actually seeing them perform, I honestly thought I would be in a different location where music commonly is played on harps!

But I purchased a ticket anyway.  It was only $45 and these things do have a resale value to someone.  Now I have to fake my way through portions that I won’t understand.  The sounds will be flying past me at rapid key signature changes and altering rhythms.

Pretending to hear in an ear that no longer functions the way it should.  The sounds will be muted with a little added bonus of a slight buzzing.  And unlike when I am home and can adjust the stereo into a unbalanced mono, tonight turning my head slightly to the right will hopefully compensate for the imperfect tones.  My chest will easily feel the beat pulsating.  And luckily remaining in your chair is expected for most of the performance.

There are plenty of occasions where I can fake my way through things.  Admitting I’m a little tired when in reality I want to crawl back into bed.  Or letting someone know I’m full because I ate a large lunch when in reality I barely at that day.  Those are just a few of the things someone with cancer does to assure those around that a little normality surrounds them.

I’ve gained back enough weight that no one really can tell unless they look into my eyes.  And I’ve kept my hair so short that most would just assume a combination of style and male pattern baldness have become the routine for my 44 years.

But my hockey jersey with the bands name is all laid out.  A gift to myself 15 years ago at a different concert, with different people.  The crowd will overwhelmingly be male and middle-aged, the cost of listening to this band.  It’s not that the music isn’t accessible,  it tends to attract that demographic by its nature of loud guitar and drums.

So if you’re walking around the area near The Freedom Trail in Boston this evening and your eyes are cast upon a rather tall guy with a black jersey that says Dream Theater with the hat pulled down just above his eyes.  Say hello, it’s me.  I don’t bite.

But do me a favor, talk into my left ear.  The right one has some issues these days…

Those Eyes…

Snap

Usually those eyes are filled with joy.  Every now and then you get to see some humor or mischievous thoughts, even sorrow about certain topics.  But this was the first time I had seen rage.  Full blown anger that stopped just short of springing into action.  Once she had leaned over to whisper into my ear, we collected our things and left quickly.

The weekend was supposed to be just something relaxing.  A little work on my house getting it ready for the realtor to take some pictures.  It was also Easter and a nice dinner was planned.

Now the two of us had a secret we couldn’t share with the others and it colored the rest of our time.  Her watching me and me watching the door.  Waiting for the bell to ring and the presence of someone who didn’t belong to impose himself.

My niece had needed to look up something at the library.  Neither of us expected to look up and the visage of my former father-in-law would be looking back.  For me it had been a quick glimpse as he walked by, but Susie gave me the impression he had been watching for longer.

There was a time when I would have just stood up and over him (I’m 4 inches taller than him).  My voice would not have been loud, but it also would not have been kind.  They had been cruel in ways that no one should experience and my niece was well aware of the story.

So I taught her to do the opposite of everything we ever talk about.  We left.  We ran away because she would have regretted saying anything and I would have felt guilty for letting her.  And her expression scared me.

Her protective nature was in full display.  Knowing that I was going to end up hurt caused her to jump into action.  Everything her parents and friends have done to form her emotions over 15 years came full circle.

Dinner that night was quiet.  Two cars had left Boston, both full of people.  Now two of us were racing back to my house to wait out something both of us hoped never occurred.  Two different reasons for that thought, but another secret that we didn’t need to giggle about having shared.

After all the boxes of paper had been loaded into the cars.  Papers from drawers that visitors to my home didn’t need to see.  A few other items that I also didn’t need photographed for the world to examine.  We told our secret.

People weren’t happy.  They were just as protective but understood why we waited.  The truth needed to be spoken before we got into a car for the hours long drive back.

Everyone assumed I didn’t feel well and was hiding it.  Making sure that we finished our task without me sitting in a chair or worse.  But one thing was apparent, they were grateful I hadn’t done anything.  They older crowd knew that was something my niece didn’t need to see.  But we also know that silence came at a price.  Self-respect.

Visiting the therapist later was my release valve.  Her advice had been to get angry and let it out because it was the only way to deal with it.  Throw something, yell, just rip a stack of paper.  Anything.

Not talking about things is what caused some of the problems in the past.  But that past also needs to not have such power on my present.  I was told that some weakness had led to me not being able to protect my daughter or ex, but on that day I hope I showed a strength in protecting my niece and later my family by not doing anything.

 

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.