The Touch of the Master’s Hand: Battling ALS with poetry

Life with ALS is about change. Everyday something seems to change. From the meaning of the word 'throw-rug' to the ability to stay awake.

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Image courtesy: Screen shot http://www.neuromusica.org/servicios.html

CHARLOTTE, NC, March 12, 2017 – Back in 2003 when I took a job in public relations with an oil company in Saudi Arabia, I decided I would do only enough research necessary to adjust to my new home.

Though travel has been a major part of my life for the last four decades, Saudi Arabia presented a new set of challenges with which I was totally unfamiliar and I wanted no preconceived notions or biases to cloud my thinking.

I have, in many ways, adopted the same philosophy since the onset of my ALS, choosing to live each day as a new challenge rather than anticipating what it will bring in advance.

As a result, most of the changes I am experiencing are unexpected.



The gifts of ALS: generosity, kindness and compassion


I am now in a “shuffling” phase of walking where I drag my feet along to get from point A to point B. For whatever reason my right leg sometimes seems to be ambitious and frequently wants to take off on its own by erupting into a sudden burst of energy.

Years ago we opted for hardwood floors inside our house with “throw rugs” and oriental carpets covering certain areas. I never really understood what a “throw rug” was until I learned that if you trip on one with ALS you can find yourself literally “thrown” across a room in a mere matter of seconds.

Eating has been a challenge since the beginning but recent weeks have produced an abundance of foamy saliva in the back of my throat which is apparently killing my appetite as well as my taste buds. I still feel hungry at normal meal times but when I sit down to eat, a few bites is more than enough to satisfy my hunger. Even worse is that I no longer taste anything the way it should so the joy of those few precious bites is no longer a factor.

I still feel hungry at normal meal times but when I sit down to eat, a few bites is more than enough to satisfy my hunger. Even worse is that I no longer taste anything the way it should so the joy of those few precious bites is no longer a factor.

Another new development is a sense of sleepiness. For years I have met my buddies every morning for breakfast be it a holiday, special event or just another day on the calendar. I typically arrive at 7 am and, on any given day, there may be anywhere from three to ten of us telling lies and solving the world’s problems.

Most recently I find myself dozing off in the middle of each session. The guys tease me about it and tell me they’re going to get me a seat belt, but it is upsetting to realize that after a full night of sleep I am still so tired just an hour or so later.


Battling ALS: Hitting the wall, breathing and old friends


I have worried about this part of my condition about as much as any aspect of the disease, but then I recalled a poem I heard years ago on television that somehow changed my perspective.

In the mid-1980s the Smothers Brothers, a satirical comedy folk-singing team had a popular variety show on CBS. Though often controversial by today’s standards, the program was mild in its satire, but the brothers never ceased to push the envelope as close to the edge of censorship as possible.

During one episode, a reader came out and recited a beautiful poem which I have not forgotten to this day. The words are simple, but the message is powerful, and, for me at least, it defines precisely the worth of an individual no matter how old or crusty or seemingly

The words are simple, but the message is powerful, and, for me at least, it defines precisely the worth of an individual no matter how old or crusty or seemingly enviable that person may appear to be. Though not from the Smother’s Brothers show, this is a classic rendition of The Touch of the Master’s Hand written by Myra Brooks Welch

The Touch of the Master’s Hand

‘Twas battered and scarred and the auctioneer
Thought it scarcely worth his while
To waste much time on the old violin,
But he held it up with a smile.

“What am I bid, good folk?” he cried.
“Who’ll start the bidding for me?
A dollar, a dollar … now two … only two …
Two dollars, and who’ll make it three?

“Three dollars once, three dollars twice,
Going for three” … but no!
From the room far back a gray-haired man
Came forward and picked up the bow.

Then wiping the dust from the old violin
And tightening up the strings,
He played a melody pure and sweet,
As sweet as an angel sings.

The music ceased, and the auctioneer,
With a voice that was quiet and low,
Said, “What am I bid for the old violin?”
As he held it up with the bow.

“A thousand dollars … and who’ll make it two?
Two…two thousand, and who’ll make it three?
Three thousand once and three thousand twice …
Three thousand and gone!” said he.

The people cheered, but some exclaimed
“We do not quite understand …
What changed it’s worth?” and the answer came:
” ‘Twas the touch of the master’s hand.”

And many a man with soul out of tune
And battered and scarred by sin
Is auctioned cheap by the thoughtless crowd
Just like the old violin.

But the Master comes, and the foolish crowd
Never can quite understand
The worth of a soul, and the change that is wrought
By the touch of the master’s hand.

O Master! I am the tuneless one
Lay, lay Thy hand on me,
Transform me now, put a song in my heart
Of melody, Lord, to Thee!

Read more at Poem : The Touch of The Master’s Hand

Contact Bob at Google+

Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)

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

Editors Note:  Support Bob’s GoFundMe to give him a hand up

Follow Bob on Twitter @MrPeabod

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