Speaking In Tongues

Posted On January 19, 2023

An Adirondack Outlaw’s fight to give his survivor’s journey a voice.

“You will most likely never speak again.”

     Those words were spoken as part of my Memorial Sloan Kettering cancer surgeon’s final grim prognosis.  Just before they put me under and wheeled me into the operating room. Just before they surgically cut out my tongue. Just before they sawed off the left half of my lower jaw. Just before they rebuilt my face with my ass. Just before twelve grueling hours of surgery they gave me a fifty-fifty chance of surviving.

Those were among the last words I heard as I felt my wife’s hand slowly slip from mine. As life’s light faded.  As I drifted towards darkness.

“You will most likely never speak again.”

Those were my cancer surgeon’s last words.

Just before.

    Initially, my surgeon’s prognosis was right. As I slowly recovered from surgery, the blips and beeps of all the various machines I was wired to were my voice. Those plus the breathing machines funneling oxygen through the bandages wrapping what would forever forward be my face.

     Through the purple haze of powerful pain med IV cocktails, I could hear myself breathing and beeping. I sounded like some futuristic underwater Jedi Knight fight scene between Darth Vadar and some rogue R2 unit.

     For a while, that was how my body communicated to my surgeons and family that I was alive.  Then one day the docs sat me up.  They removed the bandages. I demanded a mirror. My stark new ass-face reality stared back at me.

     At first, my communication with family was rustic; a squeeze of the hand, nod of the head, or a glance.  My wife and family rallied around me. Over time, our communications system evolved.

     I remained in that Memorial Sloan Kettering hospital bed for a month. As I regained strength, my family brought in a dry erase board, and a calendar. They wrote labels on key equipment items. We communicated by dry erase marker chalk talk.

     That technique worked initially, but very quickly proved cumbersome. I knew that if I were to have any sort of remotely productive life forward, I would need to develop a more refined means to communicate.

    As my release date grew near, I contemplated learning sign language.  Then I realized, if I learned sign language, who would I talk to? None of my doctors knew sign language, no one in my family did either, in fact, no one that I knew of back home in the world I was about to return to knew sign language.

Imagine stepping to the counter at Tim Horton’s in Watertown, NY and trying to order a large coffee, in sign language. Or asking an employee at Walmart where they’d moved the toilet paper isle to, using the sign language for toilet paper.

No, I knew as my wife finally wheeled me out of Memorial Sloan Kettering that I was going to need a better plan than sign language or dry erase board chalk talks as life moved forward.

     The first weeks at home were a challenge. I could make humming noises in my throat, but not much beyond that.  I was still hooked to a myriad number of tubes, not to mention stoned to the bejesus. Which was not surprising. They’d sent me home from Sloan Kettering with enough high-powered pain killers to sedate an entire elephant herd for six months.

     My wife and I quickly realized that once discharged from Sloan Kettering, there was no real long term recovery plan.  We agreed; there was only one reason they would send a patient home with such a stockpile of high-powered pain med cocktails and no plan.  The medical professionals never truly believed that I’d need one. If we were going to prove them wrong, Robin and I were going to have to develop a long-term plan of our own.  So, we did.

     While my left leg healed from where they’d taken all the tissue from my ass, we first focused on weaning me one at a time off all those drugs.  That hike was hard. I left Memorial Sloan Kettering in early September. We were still weaning my body off pain medications at Christmas.

     While the wound in my leg slowly healed. Robin went back to work.  I remember the day the wound plug in my leg burst. I was home alone, in a reclining chair in our bedroom. I was still hooked to an IV, feeding tube, and catheter. Suddenly, there was blood spurting everywhere. I plugged the wound with paper towels and applied direct pressure. I tried to call my wife at the hospital on my flip phone with one hand, while stemming the red flow of blood from my leg with the other.

There was only one problem, I still had no voice.

     I don’t remember exactly what happened, but somehow, Robin realized it was me on the phone, I was in trouble, and she needed to come home. I ended up in the hospital emergency room where a local surgeon re-stitched my wound shut.

     I knew at that point. There was only one answer. While we weaned me off the drugs, while my left ass cheek healed, while my newly reconstructed face slowly shed stitches, while I learned to breathe and to swallow with half a lower jaw and no tongue, while I slowly freed myself of all the tubes, gizmos, and gadgets I was attached to, learned the ins and outs of my feeding tube, between all the return trips to navigate New York City for monitoring by Memorial Sloan Kettering’s medical team in mid-town Manhattan, there was one other task I needed to tackle. I needed to teach myself to speak.

With no tongue.

     It was a process. It took hard work, perseverance and practice.  At first it was small words, garbled, hard to understand, generating a great deal of frustration, each word coming at great cost.

     As days progressed, it got better, those around me began to actually understand me. At some point, after a month or two at home, Memorial Sloan Kettering scheduled me for speech therapy.

      I remember our first visit to the Memorial Sloan Kettering speech therapist’s office.  Robin and I walked in and sat down. The therapist asked several questions. I began talking, giving her verbal answers.

  She said, “Mr. Monroe, there is really nothing I can do for you here. There’s no need for you to return. You’ve already done far more for yourself than I could ever do.”

That whole visit lasted less than fifteen minutes.

     As time went on, my speech slowly got better. It was not without great effort.  What is it like? Speaking with no tongue?

  Here’s how I’d describe it:

“First, grab your tongue with a pair of pliers. Then squeeze and pull as hard as you can. Now recite the Pledge of Allegiance. Backwards.”

(P.S. I’m a trained professional. Please don’t try this at home.)

     That’s about as close as I can come to describing the effort it takes to speak with no tongue.  Then there’s the price I pay afterwards.

Yes, that’s a fresh bloodstain on that paper towel.

Yes, that’s me you hear retching out behind that big tree in camp, or at home in the bathroom.

I’ll spare everyone the truly gruesome parts.

     The physical problems aside, those often aren’t my biggest challenges. Those come from other folks. 

PEOPLE DON’T LISTEN!

The vast majority of today’s society goes through life with one ear shut tight, their brain turned off, and their head buried in their damned cell phone.

     It is so frustrating, especially when I put so much effort into speech. When I step to the counter at Starbuck’s, order a large coffee, and have the barista look at me with a straight face and respond;

“I’m sorry sir, but we don’t sell elephants here.”

     Or to have the receptionist at my local dentist’s office mimic my effort at speech and start giggling. Then do it again and have the other receptionists join the laughter.

WHILE I’M STILL STANDING THERE!

      Or to be in a women’s clothing store at the mall, asking a salesclerk for help as I’m trying to buy a sweater for my wife as a Christmas gift, and getting the response:

“I’m sorry Sir, do you have an adult caretaker with you who we can talk to?”

These are all true experiences.  They still happen.

(P.S. Some of the more egregious offenders likely don’t realize it, but they owe their continued existence to my extremely Kum-ba-yah day to day state of Zen.)   

     Which brings me to the present moment. All of these experiences have motivated me. Made me stronger. Strengthened my resolve.  They motivate me to write and share my stories as a writer.  When I’m writing, my pen is my tongue. Sharing the written word on my blog and through print and on-line publications has allowed me to speak volumes.

     But I’m never satisfied. I’m always challenging myself, seeking higher peaks, blazing myself a new trail. So, I decided to push my limits and step outside my Adirondack Outlaw blog writer’s comfort zone.

Enter my Saranac Lake boyhood hometown’s Adirondack Center for Writing

     I’ve been a supporter of The Adirondack Center for Writing for a number of years now. They’ve carried my adirondackoutlaw.com blog on their “Blogs By Locals” site. I’ve donated money to their cause, attended some of their seminars.  Last summer I attended their Kick Ass Writer’s Festival, which was most excellent.

      They host a popular live spoken word event series called “The Howl Story Slam”. I contemplated entering that a year or two ago, but after thinking things through, rather than embarrass myself or be that hiker who has to call the Rangers for a rescue once they realize they are in over their head and in peril, I decided that was not a forum or format that fell within my capabilities.  At least not currently.

     They do, however, host another spoken word writer’s event; “Barkreaders”.  It seemed much quieter, more comfortable, non-competitive, and intimate.

A featured author is invited to share career journey insights and read, followed by an open mic where any and all writers are invited to share a short piece of their choice, with a five-minute time limit.

     I decided that this format was much better suited to my capabilities and purpose. A place where I could push my limits as a writer/survivor and challenge myself.

    A couple of months back, I slid in quietly and read one of my poems there, “The River Calling” on a trial run. It seemed to go well.   I rather enjoyed it.

     So, I made plans to attend once again. Last night, January 18, 2023, I did. My wife Robin, brother Ray, and Sister-in-Law Patty accompanied me.

     After the featured writer shared a bit of his writer’s journey and read from his book, a number of local writer’s shared a variety of poems and stories at the open mic, an eclectic group to say the least. As an Adirondack Outlaw without a tongue reading a poem, I felt like I fit in.

I read my poem “Breathe”.

“You will likely never speak again.”

     My cancer surgeon made that dire prediction fifteen years ago, and counting.

Look at me now.

I’m an Adirondack Outlaw, writer, survivor.

Living In the Day I Am In.

Speaking in Tongues

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Until Our Trails Cross Again:

ADKO