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.


Additional work to be done…


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.

Sisyphus on Roller Skates

Evasive Action


I haven’t written for days and the thoughts in my head are so scrambled that I really don’t know where to begin my tale.  There’s obviously a beginning.  And I’d be the first to acknowledge that I would skip a few of the details that came before that since I am still hiding them from myself along with anyone else.  Some conversations just can’t pass my lips without darkening the skies for others.

Last week I couldn’t stop thinking about my daughter.  Two years have slipped by and I still have so many questions that just aren’t going to ever be satisfied.  Everyone around me kept asking if I was okay, and I just told them I was tired from a switch in medication.  It wasn’t like I spent my days like a zombie, life does continue just without any color or sound.  But my lie was going to come out and effect those around me just when they thought maybe we had gotten through the worst of it.

The saga of last Thursday is simple.  Don’t ask for even the simplest of help and everything is going to spin off axis very quickly.  Some thoughts take on such huge weight emotionally, they smash anything else.

Sisyphus on roller-skates pushing a flaming piece of lava uphill?

The trigger was simple, a stupid commercial on television.  It led to me wondering if the ex was doing okay on that day.  (to think otherwise means losing some of my humanity, and that isn’t an option.)  Since I was already in pins and needles, it didn’t take much more.  My own family didn’t mention a thing.  It was as if they wanted to forget what to me is the worst thing possible.

So by dinner I was so consumed with anger and fear that I knew it was time to get to the doctor.  Not a panic attack, those are easy to control.  I know those signs all too well.  But I couldn’t stop shaking and my inner demon was whispering nasty thoughts.

The biggest lie of my life has been that I can handle this without help.

Most times it is just something that passes as quickly as it enters my mind.  A flash of memory, some song or picture, little things that bring a moment of melancholy.

Thursday was different.

While for some people this sounds like whining, for me it is the single biggest survival technique I know.  It was hard to admit when someone used this information against me and everyone expected that I would do nothing in return.  Instead I put on my Edmond Dantes mask and went full revenge.  Some things can’t be overlooked.

Yesterday I heard so many people make fun of Rhonda Rousey for admitting that losing a fight put her in such an emotionally low place that she thought about ending her life.  They thought it was stupid that a sport could do that to someone.  It was horrible to hear people tear down someone for being honest about weakness.

A few days had passed since I ran for help as quickly as I could.  The gentle reminders from the family I stay with in Boston that they would have talked all day if that was what I needed.  The one friend I have made this past year basically just giving me a hug and whispering that she’d sit in the chair if that was okay.

Some lies can remain buried forever.  They only slowly destroy.

My lie didn’t want to wait.  I have a serious weakness and always will.  It can be easily exploited.  I guess that protecting my daughter never ends…

Dr. Tyson

Voice Work

Sometimes the line between fantasy and fact has become blurred in the journal I keep.  Separate from the blog, which at times picks up on themes I’ve been working through, only I read this.  A few months back I gave a lecture on the ability to use writing as a method for healing.  In my case it was mostly limited to ideas about my daughter with some of the cancer stuff thrown in.  I could hear every note of her voice as I constructed this “new world”.  It was supposed to help.

At times I know that I have crossed into a delusion that takes some effort to come back from.  Not understanding that no matter what I write, as much as it helps me feel anything at the time, it can’t become real.  Getting drawn in, like an addict knowing that with the next fix their world will go numb, I keep writing those stories.

Pages in a notebook, reflections of diodes on a computer screen, it will some day fall into the hands of people who are going to be upset not really knowing that these thoughts occupied a space still.  Time heals certain wounds, but trying to decide how to live a life on a path I didn’t chose, good luck with that.

I tried to explain Black Holes to my nephew.  He’s seven years old and asked a question.  I ended up scaring the life out of him with my description.  That’s why I wish Neal DeGrasse Tyson had been in the room.  He would have made it so simple my nephew would have been able to recite the entire story without any gaps.  And certainly not the nightmare I might have induced.

A voice that might be able to capture what I am feeling as much as what I am writing means a lot to me.  This topic has always been deeply personal, having someone who knows when to pause at the right moments helps.  Where my voice, even the inner one, cracks with certain words or ideas; I believe his might be able to carry a strength mine lacks at times.  Not for lack of conviction, but just my own fears coming through and forcing me to relive something few understand.  (And I’m grateful my own family can’t understand.  There will be time for that in the future…)

My daughter was a ray of light in my life.  And like any ray it gets broken up by things in the atmosphere and scattered around in smaller pieces.  It’ll be ten thousand years before the light from her candle reaches some other life in the universe.  But it still shines.  Having someone offer that lesson up is more than I think I may be capable of.

I believe that the part that scares me most is finding that I no longer have any stories to write.  That my hopes have left and the stark reality of life replaces everything.


Wednesday’s with Me…

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

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

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

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

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

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

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

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

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

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

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

Lies, Too Many of Them

Those eyes are mine and they know the lie I have been telling.  The mirror isn’t really necessary when every day is just a continuation of what lays just beyond the reach of just about every person I know.  It’s so easy to keep saying the words, letting people think one thing when the reality is something very different.  Can I justify it?  Only to myself and lately my brain has been insuring that I don’t eat or sleep much because of it.

I can say that everyone tells the same basic untruth, letting people think that everything is alright when all signs point towards quite the opposite being true.  The number of times I tell people that “I’m okay”, it’s too large a collection.

If I’m lying to those around me, why admit it?  Much less in the form of a blog that anyone with internet can potentially see.  Because I know what happened the last time I just sat around and pretended I could handle things.

Votrient – a lovely drug meant to help me maintain a balance between being mostly healthy and getting very sick again.  When I was trying to hold it together after my daughter died, ignoring my pain and following the same lie my ex needed, that the world was fine; I couldn’t sleep and didn’t eat.  It means the medication wasn’t going to help and I knew it.  Slower than I knew, but worse than I expected it sent me directly to the hospital too many times last fall.  Welcome back cancer, you dumb companion.

That anger, pain, grief, all of it was pushed so far deep that it started to kill me.  And I was okay with that.  I’m still okay with that.  Going to doctor’s and yet not caring about the result.  Still not really caring about the result.

So I kept lying to everyone around me.  “I can handle this.”  “Don’t worry, if I need something I’ll ask.”  And my favorite, “Things are fine.  But thank you for asking.”  Slogans that sit on t-shirts, lies flowing so easily off my tongue that I’m angry with myself.

Last year I let too many other people dictate how I should deal with things.  I knew I shouldn’t do certain things, they made me unhappy, angry, sad, and resentful all at the same time.  Those feelings are back and stronger than ever.  I want to do something, yet I know I need to do nothing.

So the lies continue.  I upset that I wonder endlessly how things might have gone if I had gotten sick and my daughter was still around.  Scaring the hell out of a small child isn’t the plan, but what would the world have been like.  I can’t change the laws of nature, the rules of the universe when it comes to death.  That’s selfish, self-serving, and impossible.

I wish some times that I was a different person and able to let people in.  I closed off before I saw the door shut and lock itself.  Being scared to see another person leave means I continue to tell people I can handle this, that things are fine.  All lies.

That promise to my daughter about being better than I was has fallen aside since I realize at this point I’m can be.  I have lost my way and can’t see because I no longer even open my eyes.

Right now I hate myself.  And the only thing I truly want, know I need, is something I refuse myself.  A day without the lies.

Lines in the Sand

<a href=””>The Guilt that Haunts Me</a>

Sometimes you just freeze in place, your body just stops responding and a wave of panic so severe takes hold that you don’t really know what emotion you are feeling.  When I was told that I was to blame for my daughter’s death, it did all of those things and more.  Someone told me the normal thing would have been to start yelling about how could they say that to me, but instead I grabbed my tail and stumbled to my car.

I went home and sat on the couch to watch some television.  I didn’t cry, get angry, or do anything other than just sit there and listen to dialog.  What if she was right?  What if I had done something differently, would the outcome have been changed?  Those would have been great thoughts, but all I did was push it away and watch the screen blink back at me.

The excuses I allowed for her behavior never addressed my growing and very unhealthy emotional breakdown.  While I kept ignoring how it was affecting me, I concentrated on my physical needs.  Two weeks after hearing those words I was in the hospital having a portion of my kidney removed.  My time needed to be spent dealing with that, not the angry words of someone who didn’t know the lengths I had gone.

My guilt just kept getting worse at times I didn’t expect.  Sitting in the office, not saying something while I was in a therapy session, I withdrew from everyone around me.  I confused anger for grief and let myself slip deeper into a depression that made my world so much darker.

If your going to hit someone, always make sure you go for their biggest weakness with your first punch.  It knocks them off everything right away and rarely allows them to recover.  The only time that advice is valid is if you find yourself in an actual fist fight.  Lashing out at someone like that requires a lack of human compassion that few people ever exhibit.  [And my former mother-in-law showed a stunning lack of compassion even for her own grandchildren]

But my guilt kept growing and it got so bad that in order for me to be able to address my own medical needs I left my house, left my family, left people I would have died for behind.  I went someplace safe where I could get help that I knew I desperately needed.

“What if’s” are horrible things.  They place you in times and events you can’t change.  There are rarely days where I don’t wonder if I had just been there would my daughter be alive.  It compounds the problem of having not been in the room when she did die.

I’ve calculated the time over and over that the drive from my office to the hospital would have taken.  20 minutes with my lead foot pushing the pedal through the floorboard of my Volvo!  20 Miles that on that day felt like I was on Mars.

How have I dealt with the guilt?  I have a button that I sometimes wear as a joke that resembles a Construction Zone sign you might find along the highway.  There are few people who understand and that’s a good thing.  I can walk someone through the steps they should take, which are the polar opposite of my stumbling, unhealthy path.

Every day I remind myself that I loved that little girl more than anything, her mother as well.  But it doesn’t do much to help me.  Odd that I continue to protect that other person [m-i-l] when it would have been easy to expose her issues.

Guilt has a pretty good stranglehold on my emotions plenty of days.  Forgiving myself for something I couldn’t stop is much harder than anything I have ever attempted.