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Battling ALS: Reversing aging, as life becomes more poignant

Written By | Jun 4, 2017

Image from Markus Spiske –

CHARLOTTE, NC, June 5, 2017 – The morphing process continues in the on-going never-ending struggle against ALS. Back in 1922 F. Scott Fitzgerald wrote a short story titled “The Curious Case of Benjamin Button” about a man who lives his life in reverse growing younger rather than older.

Fitzgerald’s tale was turned into a movie starring Brad Pitt as Benjamin Button in 2008. Today, I feel much like the fictional Button must have felt as the morphing process had reverted my useless T-Rex arms into more human aspects of life.

Today, I no longer drive, but my grandchildren do. I sometimes need help with eating, while my grandchildren are self-sufficient.

My son gets excited when his baby daughter holds up her head. My head, on the other hand, droops on my chest, although that does make it easier to sleep on airplanes.

Writing has now become difficult but not for the grandchildren.

My grandchildren no longer where diapers, while I rely on Depends.

Panama: Beautiful dresses and excellent emergency health care

Sooner or later, my grandchildren will be taking care of me rather than the other way around. It never occurred to me that aging could be so definitive.

Tomorrow marks another milestone in the saga as I journey to Salisbury to get the final adjustments on my motorized wheelchair. Once it arrives at the house, I already know that my 4-year old and 1-year old grandchildren will begin to think that I’m pretty cool with my own movable chair.

For that matter, so will my 16-year old granddaughter who still loves to drive me around golf courses in a cart.

Last Friday I turned in my driver’s license so that I would no longer be a road hazard. It was a monumental decision because there was the sudden realization that I am now totally dependent upon the goodness and the schedules of others. In many ways, freedom is no longer part of my life.

In many ways, freedom is no longer part of my life.

On the other hand, there are benefits. I can now get through airports faster. Both security and customs are far easier to negotiate when you are a “hell-on-wheels” traveler.

Had I known that when you turn 65 you automatically qualify for TSA Pre-check and that when passing through international gateways a wheelchair is almost as good or better than Global Entry, I could have saved myself $200 in fees and time wasting appointments. Live and learn.

Live and learn.

Now that I am no longer driving, I have started going back to church on Sundays. Sunday mornings were lucrative driving days for UBER, but not it just seemed to be a good idea considering the inevitable. The last time I attended church, however, I had an inspiration that I found to be truly rewarding.

Battling ALS with an electric wheelchair and retropulsion

In 1969, Jerome Lawrence and Robert E. Lee (the playwright not the general) wrote a play titled “The Night Thoreau spent in Jail.” The story centered around a single night that poet, essayist and philosopher spent in the Concord, Massachusetts jail for refusing to pay taxes to fund the Mexican-American War and slavery.

During the course of the drama, there is a scene where Thoreau is savoring the natural surroundings of Walden Pond when he is criticized for not going to church one Sunday morning. Thoreau responds by saying he would rather spend his time outside in God’s nature, beauty and creation than indoors listening to the words of the minister.

On this particular Sunday morning, I decided not to go into the church for the service but to sit outside in the shade on a bench my family had donated to the church and soak up the mild breezes, the chirping sounds of the birds and the warm summertime air.

I could not hear what was going on inside, but for that gentle, serene hour, I was alone with my thoughts in the shadow of the church and somehow it seemed, to me anyway, that God was every bit as present as within me as He was in the sanctuary.

Perhaps Thoreau got it right. Surly there is solace and comfort in the natural surroundings of this tiny blue marble we call earth.

When I learned of my ALS disability, it immediately occurred to me that my lifelong quest to visit 100 countries or more might be in jeopardy. In recent years I have become keenly aware of the fact that time is running out.

And then I realized that maybe God was helping me after all. Perhaps He was saying,

“Everyone has a finite number of days. Yours are clicking off the calendar quickly. Now I challenge you to complete your task and to reach your goal before your personal calendar ends.”

How many days remain I do not know, but I have always believed in my heart that God created this planet to be explored so that we can better understand who we are and our reasons for living.

He has issued me a challenge, and as long as my mind does not deteriorate with my body, I intend to go as far as I can to succeed in that goal.

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 journeys 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 ( and his goal is to visit 100 countries or more during his lifetime.