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Living with ALS: We keep our brains, we keep our memories

Written By | Mar 25, 2019
ALS, Brain, Neuron, Bob Taylor

CHARLOTTE, NC: I never truly understood what the great French philosopher Rene Descartes meant when he wrote, “I think, therefore I am. After reading an article by another ALS victim, Rick Jobus, I have a much clearer idea of what Descartes had in mind.

Jobus opines that:

“As our physical function and utility erodes, we are mercifully left with our thoughts, hence our reality. ALS is capable of many devastating outcomes. Thankfully there are elements of one’s essence that escape its reach. ALS cannot vanquish the spirit. It cannot cripple love. It cannot stifle courage. It cannot arrest faith. It cannot penetrate the soul. Most importantly, ALS cannot impact eternal life.”
The Body Symphony

In his column, Jobus compares his pre-ALS body to an intricately orchestrated “collaboration” conducted by the central nervous system that sends continual messages from the brain to 206 bones and 630 muscles. The normal human body is an intricate and masterful symphony.

When everything operates as designed, humans are able to control this massive orchestra of neurons without effort be it walking, breathing, eating or any other physical function necessary to live.

When ALS enters into the arrangement certain instruments begin to dissipate, and the conductor must find newer more ingenious ways to continue the performance.

Jobus describes it as being “deprived of leadership, some members perform erratically. Over time, some refuse to play at all. Eventually, the orchestra’s playlist truncates dramatically.”

The Brain: Separating man from the rest of the animal kingdom

There are countless animals that are either physically faster, stronger, more durable or quicker than man. The difference is that humans have the ability to overcome and transcend such inadequacies. Thus allowing ourselves to dominate the potential of other creature’s strengths.

It’s all simply a matter of having a more sophisticated brain. And the ability to think and to sweat.

When you transport those abilities to the benefit of mankind, there’s no limit to what can be accomplished thanks to our superior ability to think.

I am often asked how I am able to view my struggle with ALS as a blessing. True, I am physically diminishing daily but there are two things ALS will not destroy.

The first is my ability to think and the second is my memory
Without the ability to recall my life of travel, I would be personally destroyed. That my memory is intact is indeed a blessing.

In the scheme of things, ALS is a nuisance.

The world becomes slower out of necessity, but that doesn’t mean there are not ways to get around its unpleasantness.That is not to say that frustration is not a factor, because frustration is huge. But it can also be diminished, if not defeated.

Rick Jobus writes,

“The more my body deteriorates, the more amazed I am of the magic of what it still can do, and the absolute splendor of what it was designed to.”

That, too, is a blessing.

It’s nothing more than a superior brain, you see.

I am reminded of a story about my father

When my father was serving as a chaplain’s assistant in the Azores during World War II,  they brought in a soldier who had just lost his left hand during combat. The real tragedy of the story is that the soldier had been a concert pianist in his civilian life back home.

My dad knew something about music himself having studied for years in the hope of one day making it to Broadway. The war, and later my arrival on the scene, ended that dream.  However, Dad continued to sing in church and at weddings for the rest of his life.

In fact, he even sang at his own wedding because he did not want someone else to sing to his bride on the day they were married.

Dad went to work, researching options for his now one-handed pianist. On the day his patient was scheduled to return to the United States, he presented the despondent soldier with a stack of sheet music. Each a piano piece that can be performed with one hand.

There’s that human brain again.

Regardless of your faith, “the human body, even when impaired, is a miracle,” adds Rick Jobus.

Jobus paraphrases Descartes by saying, “Collectively we think, therefore we are…better.”

As learned men continue their studies and research, one day ALS will go the way of polio and be little more than a memory.

Though certainly too young to understand the consequences of ALS at the age of three, my youngest granddaughter was talking to my wife the other day when she was asked, “Would you like to go outside and take a walk with Peabod (the name my grandchildren call me)?”

“No, I don’t think so,” she answered softly.

Then in her innocent childlike manner she said, “Peabod can’t go. He’s got the A-S-S.”

You see, it really IS the brain and not the “A-S-S.” There are just no “butts” about it!

About the Author:

Bob Taylor is a veteran writer who has traveled throughout the world. Taylor iss 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 ( and his goal is to visit 100 countries or more during his lifetime.