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Living with ALS when a personal Mt Vesuvius erupts

Written By | Apr 14, 2019
ALS, Vesuvius, Pompeii, Volcano, Jacquie Kubin

CHARLOTTE, NC: In 79 A.D., Mount Vesuvius erupted in Naples, Italy completely destroying the city of Pompeii. Much like the San Andreas Fault in California, though Vesuvius has been mostly sleeping for 2,000 years. Scientists know that both of these natural phenomena are still dangerous and expected to once again erupt in the future.

When I was first diagnosed with ALS someone asked me if I felt angry at my fate. At the time life was still relatively normal and, though I was concerned about what the disease had in store, anger was not among my emotions.

Three years later, after constant adjustments and adaptations, my personal Vesuvius finally exploded.

Keeping a positive attitude and hopefully, my sense of humor has been my mantra ever since I got the ugly news, but at some point, the overwhelming frustrations took over and last week the spark triggered the volcano.




Whether you are a patient or a regular caregiver ALS is frequently overwhelming. Sometimes it is so strong that it becomes impossible to even think clearly. There are simply too many changes, too many decisions, too many energy ups and downs and just plain old too many too manys.

Living with ALS: Feeding tubes and living with the dreams

At the risk of sounding ungrateful and selfish, sometimes there can simply be too much care.

There are times when the combination of normal daily challenges combines with ALS adjustments to become too much to digest all at once.

I finally had one of those days on a Saturday. I got up with a positive agenda. Write my story, have a nice lunch, watch my baseball team lose again, check in on the Masters and finish up by binge-watching a new show on Netflix.

I sound like a broken record when I say that ALS brings unwanted changes in moving, eating, talking more slowly and feeling fatigued At first, we tend to dwell on things we can no longer do anymore and put ourselves in what one ALS sufferer calls the “ALS waiting room.”

That said, breakfast went well.

I was optimistic and psyched.

The good vibes didn’t last very long, however. Over the course of the week, I had had visits from three nurses who all repeated the same questions.

My feeding tube, which had been just fine since the surgery, was adjusted so that it was now seeping all manner of gross goo and beginning to sting as well.

I adapted my computer keyboard to aid my writing because there is no place to put my gimpy fingers without inadvertently hitting some unknown key that keeps me constantly “fixing” the text of the story.

Living with diabolical ALS and the misadventures of a power wheelchair

In addition, I am unable to reach the top row of keyboard keys which causes multiple corrections and typos that can eventually be corrected but also double my writing time.




Further adding to the process are inevitable itching of my nose, eyes and ears which are inaccessible thereby also become a major distraction.

The Finnish national composer, Jean Sibelius, demanded total silence when he was working. When I am writing a story, though I am not that bad, I do not like to have my concentration interrupted. Thus when a steady stream of phone calls (which I cannot answer anyway), neighborly visits, texts, and other routine events begin to make the house look like the Macy’s Thanksgiving Day parade or rush hour at Grand Central Station, the distractions begin to take their toll.

Life Volcanic Interruptions

Due to an unexpected lengthy visit by one of Jane’s friends, we got a late start to that quiet lunch I had anticipated. Normally it would not have been a problem, but on this day we were expecting delivery of a new bed to complete the renovations in my old bedroom.

Thus, lunch was rushed and filled with numerous coughing spasms as well, resulting from trying to eat too fast.

We managed to arrive home just as the delivery truck drove up. I retired to my office to post my story while Jane waited in eager anticipation for the bed.

The delivery men were halfway down the yard when Jane noticed the bed was white rather than the dark wood she had ordered.

Living with ALS while avoiding life’s bumps in the road

Long story short, the bed went back, and we are now awaiting a phone call next week to see if the company even makes a bed in “dark wood.”

That’s when the storm began brewing both personally and in reality. Now

I was getting angry. Three years of frustrations and alterations had reached their boiling point.

At the same time, it was pouring rain outside, perfectly matching my mood.

When my disappointed wife went into the bathroom in the master bedroom only to discover the roof was leaking profusely the human American version of Vesuvius erupted.

BOOM!

I had had enough. Jane begged me to calm down but no matter how hard I tried there was nothing I could do.

With more coughing spasms to follow, it took a while to relax. Finally, after watching a few episodes of Monty Python and Little House on the Prairie, I was back to normal.

I decided to clean out my pre-ALS closet and get rid of things that would never again be part of my life. Therefore, reminders of a world that no longer exists; my bowling ball, golf clubs and various simple daily lifestyle items like my toothbrush (I am now a battery brush guy).

My personal Vesuvius has gone dormant again. From time to time there may be minor eruptions, but Pompeii is safe again for a while.

It’s time to once again get positive and to laugh again.

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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 (www.MagellanTravelClub.com)

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.