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Living with ALS: Feeding tubes and living with the dreams

Written By | Mar 31, 2019
ALS, Feeding Tube, Tube, Bob Taylor

By Trowbridge Estate from London, United Kingdom – 1967 tube stock farewell at Stockwell, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=20534445

CHARLOTTE, NC:  I am about to experience another milestone. I have decided to get a feeding tube as a preventive measure for the time when I am no longer able to swallow. The milestone is that I have never spent a single night in a hospital, and I am petrified. Too many people I know have gone in for routine procedures and come out at room temperature.

I understand that ALS has no cure, and I have accepted my fate, but there are still too many other things I want to accomplish before the Ferryman shows up at my door.

And so my “Benjamin Button saga continues.

When we are born one of the first things to happen is the cutting of the umbilical. In my case, I feel as though the feeding tube is nothing more than putting that cord back.




As a result, as the surgery nears, I have been having strange dreams.

On the opening day of baseball season, for example, I dreamed that I had been invited to a game to “roll out the first pitch.” No matter, baseball or bowling, I still managed to get a strike.

I am still able to ambulate on my own, though not without considerable effort to keep myself from falling, I now awake in the morning with strains of You’ll Never Walk Alone echoing through my brain.

Earlier in the week I had appointments at the VA to see a dermatologist. The routine is always the same, “Name, date of birth, last four.”

“Last four” refers to the last four digits of your Social Security Number.

Twilight Dreams

Later that night as I nodded off to sleep, my subconscious mind combined all the events of the day with the future surgery to arrive at a scenario that went something like this:

“What seems to be the problem today?” asked the doctor.

“I have a few little places on my skin that just don’t seem to go away.”

“Let me look. Well it could be psoriasis. Then again it might be melanoma.”

“Great. That’s all I need,” I said with apprehension.

To which the nurse in my dream replies, “I don’t think it’s cancer. That is unless you were in the Marine Corps.”




Returning to my birth

To my way of thinking, a feeding tube gives new meaning to the term “naval operation,” as I morph into becoming the world’s first 200-pound “belly button.”

I have even had thoughts of someone pushing on my stomach and saying, “Avon calling.”

There have been moments when I sense that I am living in some massive science fiction novel where humans slowly turn into robots.

Over the months of my diagnosis, one of the better outcomes of ALS has been significant weight loss. I dropped 50 pounds on my own before the disease and another 40 since.

So how would Sigmund Freud have interpreted my dream when I received a letter in the mail saying, “Congratulations. You are the proud winner of the ‘No-belly Prize’?”

Come summer when everyone else is white water rafting, I’ll just sit on a rock in the water and tell everyone “I’m ‘tubing’.”

In my hometown of Charlotte, NC, there’s a Chic-fil-A with limited parking where lunch and dinner traffic become a serious hazard because drivers queue in ultra-long lines to get to the drive-in for taking out.

Personally, I don’t get it.

The sandwiches are great but who waits in line for a half-hour for a chicken sandwich? Apparently everyone but me.

Enter my imagination-gone-wild dreams again.

This time, on the day I am released from the hospital I have a craving for Chic-fil-A in which case a get into that absurd line and wait.

When I arrive at the window, the servers asks, “May I help you?”

To which I respond by holding my feeding tube out the window and say, “Sure. Fill’er up!”

Traveling by Tube

Later that night, same dream sequence only now I’m in England on the way to the theater. In London, the metro or subway is commonly referred to as the “tube” so when my wife innocently asks, “Should we take the tube?”, I adamantly reply, “Damn right. It’s attached!”

By now I have accepted my plight and I am fully prepared to experience the tasteless delights of steak, cauliflower and okra smoothies.

Beyond that, I am still not prepared to accept that I am gradually becoming the Tin Man from the Wizard of Oz.

With only a couple of days left before I become retro-fitted for a bold new dining experience, I have no idea what other treasures my overly active imagination has in store.

One thing I do know, however. If the music changes from You’ll Never Walk Alone to Mozart’s Requiem, I just may “die laughing.”

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About the Author:

Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club 

Read more of What in the World and Bob Taylor at Communities Digital News

Read more of Bob’s journeys with ALS and his travels around the world

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Bob Taylor

Bob Taylor

Bob Taylor has been travel writer for more than three decades. Following a career as an award winning sports producer/anchor, Taylor’s media production business produced marketing presentations for Switzerland Tourism, Rail Europe, the Finnish Tourist Board, Japan Railways Group, the Swedish Travel & Tourism Council and the Swiss Travel System among others. He is founder of The Magellan Travel Club (www.MagellanTravelClub.com) and his goal is to visit 100 countries or more during his lifetime.