the 2 fat Firefighters

3 AM on a Monday. I awoke to the most intense cold I’d ever experienced. I was shaking violently, uncontrollably. My teeth were chattering so badly I feared I would break a tooth. I was on the couch where I had fallen asleep watching the game. I frantically grabbed for my blanket. Covering myself, I begged aloud for it to stop. It was no relief. I somehow mustered the strength to get up and trudge up the stairs, hoping my bed would provide some relief.
I was beyond cold, I was scared.
I crawled into bed and wrapped myself in the blankets, everything had to be covered down to the last toe. The trembling continued for what seemed an eternity. I had never experienced anything like it. Finally, after what seemed an eternity, it stopped.

Cold. So cold. The thought of a finger or a toe escaping my cocoon absolutely terrified me. I knew this wasn’t normal, something was terribly wrong with me. I needed to yell out to my mother downstairs; I needed to reach for my phone to dial 911. I needed to do something. But I didn’t. It was just too overwhelming and so very, very cold.
You may die, a voice in my head persisted.
“I don’t care”, I fired back.

___________________________________________________________________________________________

“Bill, you need to wake up! You’re going to b e late for dialysis!” my mother said in an elevated, scared voice. I faintly recall her doing this several times. I vaguely remember sitting up once in bed, when my blanket fell off I grabbed it and fell back into bed. The next thing I remember was 2 heavy Firefighters carrying me downstairs.

The next thing I would remember was waking up in the ICU. Struggling to focus through the bright lights, I saw several nurses bustling about the room and my mother and ex-wife in the back, chins on hands.
“Where are the 2 fat Firemen?” I croaked.
My Mother joyfully exclaimed to my wife “Yup, he’s fine.”

In the 6 days I spent in ICU and the 5 spent on the Cardiac floor I had plenty of time to gather the pieces. I was haunted by the grim faces of my family, by the cautious explanations of the medical team. I had a feeling that I had been to the 9th gate of Hell and no-one was telling me how bad it really was. I knew that I had lost 2 full days and I wanted answers. Fortunately, my ex-wife stepped up to the plate.

I had gotten an infection in the dialysis port in my chest.
I had gone on 2 ambulance rides. One to the local, useless hospital that was unequipped to treat me. They iced me down to control my 104.9 degree fever and shipped me 60 miles to a better hospital. I don’t remember one second of those rides.
I had been sedated with a breathing tube and catheter as antibiotics were pumped through me.
The port in my chest had been surgically removed and I had been given dialysis through a temporary access in my groin. You would think I would remember that.
At one point I tried to rip my breathing tube out of my throat. It took a team of very strong nurses to restrain and sedate me. I did this in front of my entire family.
My wife was preparing to tell my children that I was gone. My DNR had been discussed. It was that close.
I had Sepsis, at a 104.9 fever a man my age has a high risk of brain damage. When I asked where the 2 fat Firefighters were, I had proved that I was indeed fine.
Last, and perhaps most significant, and I say this without drama…I almost died.

In my 11 day stay, I was haunted by the unknowns. When my ex filled me in on all of the unpleasant details I had more questions than answers. Sure, the doctors told me the essentials, but I’m thankful for family for telling me the truth and for their support.

____________________________________________________________________________________________
Once I was alert I began my recovery. It’s what I do. The doctor’s were astounded at how fast I bounced back. I don’t know what the expected recovery time is, but I beat it in street shoes. After 8 days in bed, I was told that I would be working with Physical Therapy to see if I needed to go to a Rehabilitation center.

The next morning I was asked to get out of bed and try to walk. It was amazing the amount of strength it took just to sit up. I was in a complete state of Atrophy. With the assistance of 2 therapists, I attempted to walk the hallway. I was weak, dizzy, unable to support my own weight. I made it 6 steps before needing a wheelchair. It is astounding how much strength I lost by being bed-ridden.
I was told that my going home was contingent upon my physical strength and ability to walk out of there.
By the end of the day I was able to walk the hallway 6 times unassisted. The PT Therapists were floored. I was sent home 2 days later.

I have been home for a week. Recovery is slow. I’m weak and still haunted by how close I came to a dirt nap and by the unknowns. I have no memory of almost 3 days and it bothers me deeply. However, nothing bothers me more than being visited by my Mom’s best friend, who was at the hospital with my Mom when I was admitted. Her first words to me were,
“I have to tell you, I never thought I’d see you again.”

Yeah, that’s not something you hear often. Nor do you want to.

 

 

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a good week

I have to say, it’s been a good week. Other than a killer case of gout and dry-eye, which is essentially a bloody eyeball with a centralized headache behind it that makes focusing unbearable, things have been good.

Dialysis, I am happy to say, has made me feel a lot better. Some may complain about it and feel bad for themselves but I am here to say that I feel better than I have in months. So much so that I stepped forward to help out at the local Community Club meeting. I helped, alongside 7 other awesome people, prepare a meal for 86 people and then had enough energy to serve, clean tables and wash dishes after. While I admit that I was hurtin’ for certain by the end of it, I know that I could not have done half of that even a month ago.

My Social Security Disability came through this week. I have been waiting a long time and it has never been a guarantee. I was very disheartened when I was denied in December. I was very encouraged when I had my appeal this past August but still, I was not certain about being approved and even if I was, how far back would it go. It worked out perfectly for me, I will be getting a retroactive settlement from October of 2016. Over $30,000 to soften the blow. I will give my family half of it and that should set them up pretty good. I will pay back my mother and catch up on everything I have put off for the last 18 months. In the Spring I will buy a used motorcycle.

My friend Steve, who I wrote about last week must have been blessed by all of you that wished him well. After several years of waiting by the phone for MA General to call him, driving in to be tested against a cadaver because there was a fatality that may be a match for him, he got the call on Wednesday. This one was a match and he got a new liver. He is recovering nicely now. I am absolutely thrilled for him. As the saying goes, it couldn’t happen to a nicer guy. He’s a good man and a great friend.

Well, that’s it. Superman is back to his old self (for the most part). My strength is coming back, my sense of humor has caused people to say “you’re like the old you!” and I’m even losing a couple of chins in the process of dialysis.

I’m going to enjoy the day because this is a good one. I’m going to run with it because, after all, who knows what tomorrow will bring right?

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

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.

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