Tales of the ‘Rona, Episode 3, pt. 3: Jitter & Shimmer

Cardiothoracic Vascular Surgeons Office

Franciscan Health

Lost In My Mind, Illinois

“now look...

if you're gonna come around here

and say those sort of things,

you gotta take a few on the chin...

yeah you're talking about sin and redemption

well you better wear your thickest skin...

sometimes you can't please everyone,

sometimes you can't please anyone at all...

sew your heart onto your sleeve

and wait for the ax to fall...”

- Skin, Vigilantes of Love

Sometimes it’s a word.

A phrase.

A decision, a disagreement, a diagnosis can do it.

Definitely a diagnosis.

It’s spoken, then it floats in the air like a tiny white cloud from a cottonwood tree.

Dreamy.

Poetic.

Floating just long enough to distract you from seeing anything else.

It’s that moment in a conversation when the other person says that something and then you don’t hear any other words after that something.

It floats in the air like like a tiny white verbal cloud, blurring all the other words that follow.

My cardiothoracic vascular surgeon was describing my upcoming carotid endarterectomy with the enthusiastic detail of someone truly in love with their work.

Precise, thorough, patient, with the appropriate amount of dark humor he assumed I could handle.

“Think of it like this, you’ll come out of it with a really cool scar - it’ll add to your whole vibe!”

Cool.

Scarneck.

If anyone gets to slice open my neck, I thought, it’s you.

“As with any surgery, there’s always about a 1% chance you won’t come out of it alive...”

Nothing in this life is 100%, I thought, other than you telling me I’d have another stroke if I don’t let you slice open my neck, so, you win.

I can live with those odds, I thought.

“...and there’s a chance, a small one but a chance nonetheless, that you could lose your voice or some use of it...”

There they were.

There were the words - that something - the phrases, the dreamy, poetic, tiny white clouds that hung in the air blurring everything else that followed.

Not the slicing and scarring.

Not potential death.

No, not those words.

These words:

“You could lose your voice.”

Lose your voice.

Your voice.

Lost.

Studies show that up to one-third of all carotid surgery patients suffer some form of vocal cord damage. 

One medical journal states:

“Patients can suffer vocal cord paralysis or damage, resulting from any surgery during which they are intubated to artificially support breathing. 

Intubation itself is a risk factor.

One common cause of vocal cord paralysis following this surgery is from a dividing of a nerve that attaches to the vocal chords called the recurrent laryngeal nerve. At the least, patients can experience a hoarse throat for up to 18 months...”

One study was conducted where the voices of patients were recorded and analyzed digitally, one and three months after the operation.

Voice data were then measured for what is known as “standard deviation of fundamental frequency, normalized noise energy (NNE)”, and, dig this, “jitter and shimmer “.

“Jitter and Shimmer”.

Come on now.

Buried deep in the robust technicality of the medical community’s vocabulary are a couple of words that sound like they could have been lifted from the seedy underworld of blues legend Robert Johnson’s crossroads.

When the dust finally settles from my quasi-Covid19 tales, at least I’ll have the title of my next album: “Jitter and Shimmer”.

If you’re reading this - and I’m very grateful that you are - you probably know me from different legs of my journey.

Some of you knew me as a kid, or as a rebellious, wise-ass teenager and young adult trouble maker, and you still probably think of me that way.

Some of you have known me as a pastor, and that might even surprise others of you who didn’t know that’s what I did for a significant part of my life.

Others of you know me as a painter, hustling to brighten up your houses or offices with a fresh coat of paint.

There’s a few of you who only know me as “__________’s Dad” - fill in the blank with any one of my insanely talented, beautiful and unique in their own way, charismatic children - Chuck, Eric, Paige or Troy.

Or as the husband who married the way out of his league, how did he get her, she deserves medals Lauren, the woman who stays by his side, come what may.

And some of you know me as a musician, a singer in both a local rock band with a decent little following called 2BukkChukk, as well as the guy who plays solo acoustic gigs in dimly lit bars and raucous breweries.

They’re one in the same, just different chapters of the same book, and the narrative arc, the thread running through the story, is...singing.

The lifelong love of music.

Of playing a guitar, of writing a song, of interpreting someone else’s song, of being on a stage or sitting on a barstool, hearing a smattering of applause from people just looking for a brief escape from the rough edges of life.

Singing.

Singing needs a voice.

Pete Townshend wrote it, Roger Daltrey sang it, The Who killed it:

“It's the singer not the song

That makes the music move along,

I want you to join together with the band...”

I know, everyone is a singer.

Everyone.

From American Idol to The Voice to the X Factor to the endless parade of You Tube wannabe stars to every shower opera baritone and soprano around the world, everyone is a singer.

I get it.

I’m no Elvis, Frank, Freddie, or Marvin.

I’m no Mick, Dylan, or Smokey.

Hell, right now I could barely tour as a Tom Waits tribute act.

But “You could lose your voice”?

When the tiny, white cloud from the cottonwood tree floated away, I finally blinked, breathed again, and nervously asked, “Doc, can we go back and talk about that voice thing again?”

Jitter and Shimmer indeed...

Tales of the ‘Rona, Episode 3, pt.2: The New Abnormal

Chicago Heights

Fix You Department

March, 2020

Carotid endarterectomy.

Doesn’t exactly roll off your tongue.

It’s surgery to treat carotid artery disease. 

Carotid arteries are the main blood vessels that carry oxygen and blood to the brain. 

When diseased, these arteries become narrow, reducing blood flow to the brain, leading to potential stroke.

“Potential” stroke?

That ship’s sailed.

I already had the “Ask Me About My Stroke!” button.

“It’s ultimately your call”, said my cardiologist.

Nice guy.

Brilliant guy, actually.

His intimidating list of degrees, Board chairmanships, affiliations, and various other Herculean accomplishments at the forefront of his chosen profession - 

cardiothoracic vascular surgery - is, well, insanely impressive.

He’s a certified X-Man when it comes to all things artery.

We’re the same age, but I feel downright Neanderthal in his presence.

Like that cartoon that shows three dogs, the first one saying, “I help policemen, I  sniff out drugs!”

The second dog says,”I help people, I’m a comfort dog!”

The last dog - a Golden Retriever - says, “I eat shoes!”

Sitting here with my drug sniffing, comfort giving doctor, I have the distinct taste of slippers in my mouth.

“But if you don’t have this surgery, I can guarantee you, 100%, that you will have another stroke...”

I definitely don’t want another stroke.

My right arm at that point already felt like an Italian sausage hanging from my shoulder, I sounded like a two year old when I tried to play my guitar, and I couldn’t remember how to fold bath towels.

That was my thing before all this physical hell broke loose.

Folding bath towels from the clean laundry.

Folding damn towels.

Now I can’t remember how.

So, no.

No more strokes.

Just.

No.

“When is your next carotid whatever fixing thing date open?”, I asked Professor X.

“I’m all in”.

He explained my condition very calmly, very relaxed, very Zen.

Perfect for me.

I like Zen.

He covered every step of the procedure (“procedure” is the nice, non-frightening phrase for surgery), no stone left unturned, including the doctor catch-all part about the very small, unlikely, eentsie chance that I could die if I went through with the surgery.

Again with the death stuff.

He included a side note about possibly losing my voice because the slicing and dicing is all perilously close to the vocal chords.

That’s the trade off?

With that, I froze, but more about that in the next post...

“How did this happen?” I asked.

“Was it a result of the pneumonia and all that shit I just went through?”

He paused.

“Hard to say”, he said.

“Could be lots of factors - genetics, age, cheeseburgers, and of course, trauma from what you’ve been through, but no matter what, we need to fix you...”

Fix.

You.

I needed to be fixed.

My heart was defective.

My heart was broke and hurting. 

Fix.

Me.

Please...

We set the date and my drug-sniffing, comfort-giving, insanely brilliant Doctor would work his magic on this shoe-eating, fix-needing heart.

Fix me.

One more step on this mysterious, quasi-Covid, but maybe not, and then what do I make of all this, hopefully once in a lifetime ride.

Coldplay has a beautiful song called Fix You.

The lyrics make an entrance with these words:

“When you try your best, but you don't succeed

When you get what you want, but not what you need

When you feel so tired, but you can't sleep

Stuck in reverse

And the tears come streaming down your face

When you lose something you can't replace

When you love someone, but it goes to waste

Could it be worse?”

Could it be worse?

Of course it could, but right now I’m just worried about a carotid endarterectomy trashing my voice...

Tales of the ‘Rona, Special Episode Follow Up - Moving in Mystery

New York State

A desolate road

Mid ‘70’s

It’s around midnight and my family - which consists of my parents and my sister - are on our way to the “cottage”.

The cottage is a little house my Dad bought that sits on the shores of Lake Ontario across the water from Canada.

I feel like I’m older than dirt now, so let’s just say I’ve been going there for a long, long time.

Since I was 11.

If you’re familiar with the area it’s only because you grew up there or near there.

It truly is in the middle of nowhere.

But it’s our nowhere, and it has been the site of a million beautiful, life altering, character defining memories for me as long as my memory will allow.

It was a long ride from where we lived in North Jersey, but when we finally crossed the peninsula that linked us to the Point, it got darker and more desolate by the mile.

Eventually Dad would wake us up with, “We’re almost there!” and then somewhere on that stretch of road he’d laugh and say, “Watch this...”

Then...pitch black.

Total darkness.

Into the void, can’t see the hand in front of your face, locked in a closet kind of darkness.

Dad would cut the car lights while cruising down this almost gravel road in the blackest of black nights at around 50 miles an hour.

“Paul, don’t!”, Mom would squeal.

Dad’s dark night lasted only seconds, but long enough to be a frightening, exhilarating, heart pounding, adrenaline-generating, and straight up scary as hell experience.

Even as a young kid it made me question my Dad’s parenting skills, but I liked it.

I really liked it.

I liked it enough that I would scare my kids years later, cutting my lights on that same road, eliciting the same response from my wife, tossing my generationally learned parenting skills to the wind.

In my young mind, for those few seconds, we were thrill seekers, living on the edge, dancing in the dark, moving in mystery.

Moving in mystery.

Frankfort Square

May

The Year of Our Coronavirus 

Falling ill earlier this year messed with me - physically, emotionally, spiritually, psychologically.

It was just a fair amount to deal with, especially since I’m the kind of person who has truly and firmly believed in my own invincibility for, well, my entire life.

From start to where I am now, there’s been a lot of moving in mystery - what’s next, how long, when will I types of questions.

I thought that a positive result for Covid-19 would clear the mystery air a bit, provide an answer to the what was that all about question, give this big chink in my imaginary armor a Name.

The symptoms were there in spades - chills, fever, cough, oxygenation bottoming out, extreme difficulty in breathing, loss of taste, nightmares, stroke and heart issues - enough that the Name seemed inevitable.

Just needed verification.

Proof.

A positive result.

Researchers are beginning to view the months of December and January as sort of a Holy Grail of testing.

So many questions, so few answers.

Questions like when did this thing really first show up here?

How long do antibodies last in our system for this thing?

Are the current batches of tests reliable enough yet?

What about people who were sick and died without being tested?

Have people who were mildly infected just forgotten about it and moved on?

You know, questions like that.

You know, mystery.

I’m a firm believer in science, facts, and let’s get to the bottom of this type thinking.

I also believe that mystery co-exists with science.

It isn’t either/or.

Like roommates that don’t always get along, but they’re committed to the relationship.

For now, even with all the questions, I can accept the science, the negative test result in spite of the evidence that suggests otherwise.

For now, even with the scientific results, I can accept the mystery- the cut car lights - and keep moving anyway.

My patron saint of Jersey - Springsteen - wrote a song that’s equal parts poetry, prayer, and hope.

It’s called “Better Days”.

It resonates.

“I'm tired of waitin' for tomorrow to come 

Or that train to come roarin' 'round the bend 

I got a new suit of clothes a pretty red rose 

And a woman I can call my friend...

Every fool's got a reason for feelin' sorry for himself 

And turning his heart to stone 

Tonight this fool's halfway to heaven and just a mile outta hell 

And I feel like I'm comin' home 

These are better days baby 

These are better days it's true 

These are better days 

Better days are shining through...”

Tales of the ‘Rona, Special Episode - This Is a Test, This Is Only a Test

Frankfort Square

Test Results Day

May, 2020

“We don’t know what this is, we really don’t, so at this point we are just throwing everything we can think of at you to fight back this illness.”

That’s what my infectious disease doctor told me back in early February when I was, in the words of Dylan’s song, “Knock, knock, knocking on heavens door...”

COVID-19 never really crossed my mind until more recently, through a combination of my own study of the disease, new findings about how early the disease arrived on our shores, and the numerous inquiries from friends and family on an almost daily basis as to whether or not I believed this was the culprit.

It has taken over my thinking.

From the moment I get up until the moment I go to bed, always somewhere in my brain I’m wondering what it was that almost killed me?

Was it COVID-19?

Or was it something else?

While in the hospital I was tested for flu, influenza, several other corona viruses and I assume a host of other diseases, all of which came back negative.

I’ve known antibody testing was the solution.
Two weeks ago my primary doctor called and said she wanted me and Lauren to be tested, but she was waiting for a test she believed to be more accurate than many of the others flooding the market.

This past Wednesday we got word that they were ready, so Wednesday afternoon we went to the lab and did the deed.

We were told results would be ready within 24 to 48 hours.

For weeks now I’ve been convinced without a doubt that my early 2020 near death experience was COVID-19, so a positive antibody test result is what I expected.

After we got tested, I had a weird thought: are you ready to accept a negative result as well?
What then?

This morning the doctor called and as soon as I answered I knew what she was going to say. 

“Well, I am shocked, but the test results have come back and both you and Lauren tested...negative.”

Negative.

Negative for COVID-19 antibodies.

A knock me over with a feather moment.

We spoke for a few minutes and she told me of several other patients she has seen who have tested positive but not as ill as I had been, nor with the full range of symptoms that I had.
Yay.
Lucky me.

She reminded me of how within two weeks of her seeing me and Lauren in her office, both she and her husband were sick for several days.

She was stunned at our results but she said, “As your doctor all I can tell you is what the results tell me. But my personal opinion is that you indeed had COVID-19, which is why these results make your disease even more confusing...”

The emailed results from the lab include a line saying, “Results from anti-body testing should not be used as the sole basis to diagnose or exclude infection...”

Research on these relatively infant stage tests continue to come out almost daily, so we may explore further testing down the road.

But today, for the first time in my life, I’m bummed about a negative test result.
Devastated almost.

The mystery remains, the feeling of vulnerability has only increased.

To quote John Lennon, “Nobody told me there’d be days like these...strange days indeed...”

Tales of the ‘Rona, Episode 3 - pt.1: The New Abnormal

Tales of the ‘Rona

Episode 3, pt.1: The New Abnormal

ICU, Franciscan Health

Olympia Fields, Illinois 

Doctor: “You’ve had a stroke”.

Me: “Are you kidding me?”

Doctor:  “Yeah, just messing with you! We were bored and wanted to make sure those incredibly expensive MRI and EKG machines were working properly...you’re fine!”

The first two lines of that exchange happened.

The last one about the joking? Not so much.

I was finally out of ICU and looking forward to coming home to watch the Super Bowl.

I didn’t care when, I just wanted to be on my couch for opening kick off.

It wasn’t so much that I cared about a football game, it was more about a goal, a destination of home and having this thing, this monster, this spectre behind me.

My doctors had promised me I’d be home in time for the big Event, in that way that only doctors can promise things, with all manner of caveats, if’s and we’ll see’s.

It’s a variation of the ultimate parenting loophole - your kids want ice cream? 

Sure, “we’ll see”.

By Friday morning it looked like it just might happen.

I had turned a pretty big corner, was out of ICU, and my oxygen levels were looking much better.

They said I might need an oxygen tank at home but, again, I didn’t care, give me a dozen oxygen tanks, I just wanted to be on my couch.

On.

My.

Couch.

But as the day wore on, something in my right hand seemed off.

It felt tight.

It felt tingly and stabby.
It wouldn’t open and close easily.

I couldn’t make much of a fist.

I couldn’t make Spock’s Vulcan hand greeting he made  famous on Star Trek that I’d mastered.

I kept it to myself until I couldn’t.

I showed Lauren and we both agreed that I must have slept wrong, maybe aggravated my back somehow, and that in turn was screwing with my hand.

Even though I hadn’t really slept in over a week, we went with that.

Until we couldn’t.

By late Friday afternoon I’d lost most of the feeling in my hand and my arm was pretty much useless.

Lauren was strongly “encouraging” Fount, the only male nurse I encountered throughout my hospital stay, to contact my doctor.

In spite of it being a Friday night, Fount pulled it off, got through to my doctor, and the tests started up, fast and furious.

MRI’s, EKG’s, something that went on for what seemed like hours having to do with my carotid artery, and tests I can’t even remember.

Tests and more tests.

The clock is ticking boys, test me all you want, but you need to get me out of here in time for kickoff, Sunday afternoon.

Early Sunday morning dawned.

Another doctor appeared, and started typing away on the computer that all my doctors checked on when they appeared.

My screen of life and death.

“You’ve had a stroke”, she said, still staring at my Matrix-like vitals floating on the screen.

I laid back and let out a sigh.

“Really? Are you kidding me?”

She turned and looked at me with a slight smile and said, “No, you’ve had a stroke, looks like 50-70% blockage. You’ll most likely need surgery.”

I just kept staring at the ceiling.

A stroke?

Surgery?

This isn’t right, this is bullshit, this isn’t, you know, FAIR...

I was starting to smolder, fighting back a flood of tears.

This thing, this monster, this spectre, was still wreaking havoc on me.

It wasn’t finished with me yet.

No Super Bowl at home on my couch.

Damn.

Tales of the ‘Rona, Episode 2 - Panic! At The ICU

"There is no pain, you are receding,

A distant ship, smoke on the horizon...

You are only coming through in waves,

Your lips move but I can't hear what you're saying...

When I was a child, I caught a fleeting glimpse,

Out of the corner of my eye...

I turned to look, but it was gone

I cannot put my finger on it now,

The child is grown, the dream is gone...

I have become...

Comfortably numb..."

- Pink Floyd, "Comfortably Numb"

Olympia Fields, Illinois 

January something 

ICU, Franciscan Health

“These pants need to come off! Why do you have pants on? Why does he have pants on? You really shouldn’t have pants on!”

January something.

Day whatever of my ICU nightmare.

Breathing is difficult.

Very, very difficult.

I’ve never thought much about breathing.

No need to.

It’s always been as easy as, well, breathing.

By the time I’d been admitted to the ICU, I was staring down a double barrel shotgun of a diagnosis, namely double viral pneumonia with a bacterial infection thrown in just for kicks.

My oxygenation level was topping off at a little under 80%, which is dangerously close to lost brain cell territory.

Looking back at my life experiences, I don’t have a lot of those cells to spare.

As I had just recently discovered:

“In patients with healthy lungs, an oxygen-saturation level below 90% is cause for grave concern: when vital organs such as the heart and brain become starved for oxygen, the risk of death skyrockets...”

Grave concern.

Starved.

Risk.

Skyrocketing death.

Not comforting-hospital-ICU vocabulary.

I’m hooked up to a heated, high flow oxygen machine and when it’s working, it’s keeping me alive.

When the bag runs down, the humidity disappears, the air starts to burn, and it’s pretty uncomfortable.

The nurses are good - they’re all great, actually - at knowing when it’s time to switch up bags, but this time it’s the machine.

It isn’t working.

The dam machine isn’t working.

Nurses are starting to congregate (I think from now on where two or more nurses are gathered together, they should be called a “Hero of Nurses”) around my bed and around the malfunctioning machine.

Just a few hours earlier my pulmonary doctor and his cohorts were checking in on me and the discussion turned towards intubation.

Intubation is ventilator talk.

Not good.

Not cool.

With all of this information seeping into my already fragile psyche, the anxiety dial is turning up.

Way up.

The shadow of a full-on panic attack is growing longer.

And then one voice out of the chorus of concern grows louder:

“These pants need to come off! Why do you have pants on? Why does he have pants on? You really shouldn’t have pants on!”

I know hospital gown protocol - nothing underneath just in case things get out of hand and they need to get at your entire body with ease.

That and a bit of cheeky embarrassment as you amble down the hall.

When I was admitted I was wearing sweat pants and for some reason I’d been allowed to keep them on these first few days.

In fact no one noticed or said a word about them until now.

This nurse or nurses’ aide seemed overly concerned that I was still partially clothed under those sweet hospital duds until she realized I was close to an anxiety tap-out.

So she quickly shifted gears and the following is as close to verbatim as I remember of what she said in the next few moments: 

“OK, I want you to close your eyes. Close your eyes. Now I want you to just relax and go to your happy place. Close your eyes, go to your happy place.

Now I want you to picture a balloon. A balloon. Do you see it? Now I want you to put all of your worries in that balloon. Do you still see the balloon? Now let the balloon go. Let it go. Watch it drift away. Are you watching it drift?”

This one-way conversation continued while she was rubbing my arm and the others were working on getting my oxygen back up and running.

It seemed a little weird and bizarre at first, but I have to admit it was oddly calming.

It was working.

I was slowly relaxing and the panic was dissipating.

I watched my little worry-filled balloon float off into a cloudless sunny sky and I was back in my happy place.

I was calm.

Panic-free.

Anxiety-less.

Until.

Until Nurse Happy Balloon shifted gears again and crashed my mojo.

“Now let’s get these pants off!” she barked.

My balloon popped.

My worries floated back to me like confetti.

My happy place reverted back to my I can’t breathe place.

Fortunately the others in this Hero of Nurses prevailed.

My oxygen was flowing.

I was breathing easier. 

My brain cells were still intact, and lo and behold, I still had my pants on.