you don’t know

when you were young

your favorite line

was “Dad, you don’t know”

what you don’t know

there was a night

not long ago

I sat on the edge
of my bed
of the universe

one in the chamber

cursed glass of whiskey
liquid false courage

in the other hand

disgusted with yesterday

bored with today

uninterested in tomorrow

desperately seeking

a reason

to carry on

I’d lost my joy

the will to seek it

where once was strength

a cavernous

anguished

aching gash

where was the zeal?

missing the real

existing
but not living

tears of pain roll

down my unshaven cheek

one, just one

fucking reason I seek

to not end it all

the safety off

just drunk enough

sick enough

to call Bullshit

on this timed-out
worn-out
overplayed phase
I call my life

then I think of you

my precious child

your first steps
sun in your hair

your infinite

infectious smile

golden and pure soul

my heart yearns

stomach turns
my mind scolds me

at the thought
of hurting you

if I was to shed

this mortal shell

in the throes
of my selfish pain

I would crush you

my dear child

I had forgotten 

in a selfless moment

your love

ceaseless adoration

and your words

that I am

your favorite

person

in the world

 

I couldn’t pull it
the beckoning trigger

for I had vowed to myself 

in a lighter hour

I would never

cause you

a life of pain

in the name

of ending mine

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Why me? Why NOT me?

“Listen carefully, Billy”, my Grandfather said. He looked me straight in the eye.
I cried because I had no shoes. Then I met a man who had no feet.”
“What does that mean Grandpa?”
“It means, Billy, that you should never complain because there is always someone who has it worse than you. Be happy with what you have.”

I was a young boy when he said that to me. I don’t remember what I was complaining about but after that exchange I learned that men, men like my Grandfather, don’t complain.

Have I complained since then? Of course, it happens. But my brain immediately flashes back to that quote. And shuts me down. It has served me well, in fact it was one of my greatest life lessons and shaped who I am today.

People often told me during the height of my Illness that my positive attitude, and crippling denial, inspired them. I wasn’t waking up with the intention of inspiring others, I was just listening to my Grandpa. I was keeping my kids from worrying about me. I didn’t want to burden anyone.

People tell me now that my jokes and overall positive attitude about my current situation helps them. How else am I supposed to be? Should I complain? It’s not my style. It’s not becoming of a man. And nobody wants to hear it.

Why?

Because someone always has it worse. I know it. I’ve seen it.
I have friends who have lost children at the toddler stage to cancer.
I’ve been to Children’s hospital in Boston and read books to children who would never leave that hospital.
There are families everywhere dealing with dead children, wounded Veterans, mental illness, MIA’s and POW’s, gun violence, terminal illness, no Health Insurance, pending bankruptcies, the list just goes on and on.
They all have it worse than I do.
Most of them wish they, or those that they lost, were only on dialysis.

I’m strapped to a dialysis machine 3 days a week. So what? I’m alive. It may kill me, and then again, I may get a donor. It could be always be worse. One thing I have learned in my 53 years of walking this green earth is that I’m not special, I’m just a cog in a great big wheel. I never say Why me?
Why not me?

I have always said that where I am is where I am suppose to be. That applied wherever I was. Why isn’t it feasible that I am right where I am supposed to be doing what I am supposed to do at this moment?

I was given a brutal reminder of this tonight when I got a call from my friend Steve. I met Steve when I lived in an apartment complex as my family tried to bounce back from the foreclosure. We were instant friends. We hung out often and had a lot in common, in particular crumbling marriages and the love of our children. When he got divorced and moved, we stayed in touch.

Steve became very ill after he moved. His diabetes, once under control, had destroyed his liver. He needed a transplant. When I had mine, he was the first friend to visit. He had questions of course, but he was there as a friend.

Flash forward a few years. Steve was deteriorating. It was affecting his job as a Teacher. He was missing work and couldn’t find a balance in his meds, the side effects were destroying him. Soon after, a group of Teachers that praised him to his face went on to stab him in the back. He was forced to defend his ability to enlighten young minds to a committee of people who wanted him gone. After suing the Teacher’s Union he claimed a meager, insulting settlement and he walked away with his dignity in his pocket. No accolades or thanks for his 20 years of service or retirement party.

Steve lost most of his friends. Or they lost him. He is now pending disability. He just sold his car because he can’t make payments. His ex-wife is taking him to court over child-support he can’t pay. She knows he’s trying without income but wants to punish him. He can barely talk, an hour after he takes his meds he loses control of his voice. He is on a list for a cadaver transplant, it’s his only hope. Unlike a kidney, a Liver cannot be given by the living.

Tonight, I asked if he would drive up and spend a couple of days with me. He can’t because he has to be nearby in case there is a fatal car accident that will produce a proper tissue match. Plus, he has court tomorrow because his ex-wife is not done ripping his testicles from his scrotum.

Steve would love to be me. Right now, I love being me. I have friends and family who support me. My wife acted with dignity and compassion in our divorce. My children love me and will never be a pawn in a big game. I won’t die if I don’t get an organ donation in the next few months.

I worry about Steve right now, he has been a good and loyal friend. I am not worried about me right now at all.
Why?
As sick as he is, he was the one to call me to see how I was doing. How about that?

Were you to ever utter the words “what else can go wrong?” the universe very well may take it as a challenge.

Flopping like a carp…a Mike Valentine tale

This post is the 3rd installment in a series.You can catch up here and here

Mike had just collapsed on the conference room floor.

His co-workers swarmed around him anxiously barking questions. Are you alright? Where does it hurt? Can I get you anything? Can you talk? Mike Valentine wanted to answer all of them but the pain in his side was crippling and he couldn’t get the words out. The muscles below his rib cage seized, failed to relinquish their grip. He couldn’t breathe. He clenched his teeth and tried to draw breath. His GM reached down and sat him in an upright position against the wall and handed him a glass of water. Mike leaned forward, grabbing his ankles, trying to stretch the spasm away. Finally, the pain subsided. Mike sat against the wall, sipping the water and tried to regain his composure. He looked up, the entire room was staring at him.
“It’s all over.” Mike said. “Let’s continue.”
“Are you nuts?” his GM said. “You’re going to the hospital.”
Someone in the background offered to call an Ambulance. Mike resisted, insisting that it was over and he was fine.
“Have you had that happen before?” the controller asked.
“Not like that.” He lied. The truth was that he had. Not as bad but similar. He had mentioned them to his Doctor and they could find no explanation. Just one more thing to deal with.

“Well, we’re driving you to the hospital then. I’m not giving you a choice.”
Mike dropped his shoulders in defeat as he was pulled upright. He allowed his coworkers to take his arms as they ascended the stairs, walked outside and got him into a waiting van.

By the time they had reached the local hospital Mike felt fine. He didn’t want to go in. He had been the local hospital route before. It was always the same thing, they would run some tests and send them to his own doctor. Nothing would be accomplished except the waste of a lot of time. A doctor would come out and ask if he knew that he had Kidney issues.

There was a bigger picture here shaping up. Mike’s GM was going in with him. When the words “Kidney Disease” are spoken, it will be the first time his company knew that he was sick. Two hours before, he was bulletproof. That façade was about to crumble.

As they entered the building entrance, he tried to get his manager to leave him. He wasn’t changing his mind.

The check-in process was fairly quick. It was early afternoon, the ER wasn’t busy. Being in an affluent community didn’t hurt as well, Mike’s home hospital was often flooded with drunks and victims of violent crimes. There wasn’t a lot of that in this sleepy Massachusetts town Mike mused. Within 15 minutes Mike was seen by the ER physician. He was asked a bunch of questions about his health history. They did a run-up of blood work. The ER doctor was clueless regarding the episode. Mike was not surprised, no one else had ever figured out why he had these attacks either. The Doctor scribbled on his board, muttered something to his attending Nurse and went on to another patient. Mike was left to make small talk with his GM until someone came back.

To his encouragement, his manager didn’t talk about the events of the previous hours. He instead shifted gears to talking about some of the business matters that he wanted to review in the now cancelled meeting. It was a relaxed conversation and they actually accomplished something. Before long the ER Doctor poked his head in.
“Are you aware…” time stopped for Mike, he knew exactly what was coming…3,2,1 BOOM
“that you have serious kidney failure?” Mike high-fived himself mentally, he  had called it.
“Yes, I am aware” he replied as he looked over at the furrowed brow of his boss.
“Are you being actively treated for it”? the doctor asked.
“Not as actively as I should, perhaps” Mike replied. “But here’s the thing, is it related to why I’m here?”
“Not that I know of” he replied.
“Then we’re done here unless you have some suggestions.”
“See your Nephrologist. If you have his contact information I’ll have your labs forwarded.”
Mike gave him what he asked for and they left.

It was a quiet car ride back to the office. Mike decided to just get it over with.
“I have Kidney Disease” he offered. “Now you know.”
“Well something has to be wrong with you, you were flopping around on the conference room floor like an epileptic Carp.”
They shared a laugh. Then Mike asked “Does it change anything?”
“Like what, you mean your employment status?”
“No.” Mike rephrased his question. “Is this something that I should have told you when you hired me?”
His manager didn’t flinch. “That’s why we have health insurance, you dumbass. How long have you had it?”
“Since I was a teenager. It’s unpredictable in its progression. I think it’s getting worse.”
“Do you think you should have told me on the interview?”
Mike stroked his goatee, stalling.
“Yes and no. It really hasn’t affected my work that I know of. I don’t have a crystal ball so I don’t think about the what-if’s”. When I met you, I wanted you to see the man for the job, not some sick guy. Does that make sense?”
His manager nodded. “So now we know” he said.

They drove the rest of the way in relative silence. They drove through the security gate and as a courtesy he was dropped off at the door. It was 4:30. Mike was thankful and he got out with the intention of going in, grabbing his bag and calling it a day. As he nodded a thank you for the ride Mike was asked
“Where does stress fit into all of this, you know, with the kidneys?”
“I don’t think it helps, I know that much. Why?”
“Because you’re wrapped tighter than a convenience store sandwich. You try to do too much. You’re the first one in, last one out. I’m not asking for that. Take it easy on yourself. You’re getting the job done.”
“Thanks. It’s how I’m wired.”
“No, that’s how Superman is wired. Your name is Mike, not Clark. Smarten up.” With that, he put the car in gear and drove to his reserved spot.

Mike went directly home for the first time in weeks. He had some things to think about.

The End of Faith? — Tom Being Tom

Faith. Many of us have struggled with it our entire lives. Many of us will never truly reconcile the notion of a higher power. Unfortunately, we also fall terribly short in being able to discuss our differences on this complex and polarizing subject.

And then Tom of Tom Being Tom wrote this. Which I will now share for your reading pleasure. Do you follow Tom? If not I only have one question…why wouldn’t you?

I don’t believe in gods. Those of you who know me know that well, and those of you with even a passing sense of who I am probably understand that, too. 38 more words

via The End of Faith? — Tom Being Tom

Song lyric Sunday

Some of you may know this song by heart, some may have never heard it. It is one of those songs that proves the adage that the music you listen to in your formative years will always be sentimental to you, if not remain your favorite music. The latter has proven true for me, and in times when I lack clarity or need a reminder of what drives the blood in my veins I play those songs.

Bob Seger’s Like a Rock is the title track of his ’86 album that cemented my love of Seger’s gritty, honest, relateable songs. This song, before it became a Chevy commercial at least, was a staple in my daily playlist.

Now, as I find myself weakened and looking for strength I love this song more than ever. It reminds me of the days when I was young, strong and carefree. Of the days when I walked with my shoulders back and my chest out. When I swung an axe in the crux of a cold October afternoon in just a T shirt, my brow sweaty and my muscles tight, plowing through the woodpile my dad and I had just created. My friends were all playing football but I committed myself to the task at hand. Like a rock.

I miss that feeling, I want it back. I hope to get it back. When I hear this song I am reminded of better days and given hope that they will return.

Give it a listen will ya?

Stood there boldly
Sweatin’ in the sun
Felt like a million
Felt like number one
The height of summer
I’d never felt that strong
Like a rock

I was eighteen
Didn’t have a care
Working for peanuts
Not a dime to spare
But I was lean and
Solid everywhere
Like a rock

My hands were steady
My eyes were clear and bright
My walk had purpose
My steps were quick and light
And I held firmly
To what I felt was right
Like a rock

Like a rock, I was strong as I could be
Like a rock, nothin’ ever got to me
Like a rock, I was something to see
Like a rock

And I stood arrow straight
Unencumbered by the weight
Of all these hustlers and their schemes
I stood proud, I stood tall
High above it all
I still believed in my dreams

Twenty years now
Where’d they go?
Twenty years
I don’t know
I sit and I wonder sometimes
Where they’ve gone

And sometimes late at night
When I’m bathed in the firelight
The moon comes callin’ a ghostly white
And I recall
I recall

Like a rock, chargin’ from the gate
Like a rock, carryin’ the weight
Like a rock

Like a rock, the sun upon my skin
Like a rock, hard against the wind
Like a rock, I see myself again
Like a rock

Do you remember?

Do you remember
the racing heart
the angst
the fear
of making
a move
that can never
be undone?
To Hell
with everyone
they don’t
understand
what we had
and could be
Part of me
stood at the brink
of no return

I charged on
I shocked you
rocked you
knocked you
off your feet
I rolled the dice
put it all
on Red
that you
were the one
The stakes high
the timing nigh
I made my move

You later would say
it was the day
you had waited
with breath baited
it was then
that I knew
That I would
never
be good enough
for you
If it matters

I remember

My special purpose

On Thursday I entered the dialysis clinic with my bag containing a blanket, books, my laptop, headphones and half of the trepidation I had felt on my first visit. I was greeted by an entirely different Nursing Staff, which gave me the opportunity to drop my “oil change” joke 💀. It was fairly well received. I’m going to ask for a tire rotation next time to test the waters.

I already know the routine. I weighed in and sat down while 2 nurses, 2 potentially new sounding boards for my repertoire of Dad jokes, went through an impressive routine of programming the machine and unwrapping needles and fastening clamps and god knows what else. It really is something to watch, it must have taken a hell of a lot of training. When they were done and I was hooked up, they went on to other patients and I settled in for 3 boring hours.

I wasn’t in the mood for TV and not ready to read so I looked around the room. There are 12 stations in the room and every chair was full. I recognized most of the patients in the room from my first visit. The staff was all new to me. In particular I noticed a thin, older woman with a buzz cut making the rounds of the patients. I figured her to be the Nurse Manager. She was making her way towards me. After spending a few minutes with the gentleman next to me she came over and introduced herself as Kim, the clinic’s Social Worker. She knew who I was, had researched my case and apparently was looking forward to meeting me. Part of me wishes I could say the same. I respect social workers and what they do, but their goal is to get me talking about myself and my condition and how it has affected me and everything else that I don’t want to talk about. I deal well by not talking about “it”. Social workers chew away at my armor.

Kim sat down next to me and asked me a few questions about my overall reaction to the dialysis process, was I feeling better? Did I have any issues or complaints? Standard stuff. I immediately found her east to talk to. I had been anticipating an interview and instead found myself in a conversation. I certainly had time so I decided to drop my guard a bit and see where it goes.

The questions flowed easily from her and although it was standard fare; how long have I been sick; my marital status and my living situation. I answered all of them honestly and in some detail. She was taken back by my story, especially at the saga of my marriage collapsing. She kept asking, in different ways, if there was a chance at reconciliation and I continued to say no. She was surprised at my acceptance of the situation but dropped the subject. She then asked me if I was working, would I be able to or plan to in the future. I explained my situation with SSDI and that seemed to satisfy her. She then asked me what I used to do for work.

I found myself telling her all about my most recent position at the finance company and of all of the things I loved about it. I don’t know how long I spoke of it but when I was done and looked at her she looked captivated.
“If you could see the look in your eyes as you talk about that job” she said.
I had actually teared up as I had told her my tale.
“It meant a lot to me, Kim. You will never hear me utter a word of hubris, but when it came to that job I was damn good at it. I miss it.”
“I can tell.”

The conversation eventually wound down and she moved on to another patient. The emotional reaction to talking of my career lingered on. I explored it deeper and had an epiphany of sorts. Of all of the things I hate about my current situation is that I am no longer needed by people in my life. My family no longer seeks or expects support from me. I no longer go to work each day and try, in some small way. to make a difference in someone’s life. See, I had no throttle control before this happened. I was “all in” on life with family and career. I was active as possible as a parent and a husband, Teaching, mentoring and loving my kids while giving what remained of my ass to my job was what I lived for. I was a doer, a guy that made shit happen. A guy people came to. I was a great father, husband, friend and co-worker. I rode bikes and walked miles in the name of charity. I donated money I didn’t have and didn’t care.

Now I have none of it. Maybe the pace proved too much for my body.

I have beaten to death my family life on this blog and it is well documented that I love my family with all of my earthly strength. But I haven’t discussed work often and it was a big part of who I was. Men have often been accused of strongly tying their self-worth to their profession. I was guilty of this. I vowed never to be the guy who called in sick and no one noticed. My job, to quote Steve Martin in ” The Jerk”, I had found my special purpose.

The days when people came to me for advice; when calls were transferred to me because no one else knew enough or how to talk to an irate customer; having the owner boast that you are the “best in the business”; being given a seemingly impossible situation and finding a way to fix it. I have such fond memories of talking to people where the conversation started as a confrontation and ended with a “thank you.” It wasn’t that I was particularly skilled at everything, I just knew how to talk to people and I really, genuinely cared about them. I was proud to go home many days of the week with the knowledge that I actually may have helped someone through a tough day. I don’t have that anymore.

I have tried to be as useful as possible since the collapse. I volunteer at the food bank, I help some of the older people in town with basic chores. I don’t charge them, they don’t have the money. I am kind to my fellow man and I put out zero negative energy into the universe. I hope to become healthy enough to volunteer at a camp for the families of terminally ill children next summer. I am being the best person I can be.

But I don’t feel needed. I can’t believe how much I miss that feeling.