Skip to main content

Constantly adjusting your world to living with Amyotrophic Lateral Sclerosis

Written By | Jan 26, 2020
Amyotrophic Lateral Sclerosis , ALS, Living with ALS

CHARLOTTE, NC: Recently I was reading an ALS newsletter when one particular article caught my eye. It aroused my interest because the progression of the affliction in the patient so closely paralleled my own experience that I was curious to discover what might be in store for the future. So with great enthusiasm, I immersed myself in the commentary, until I encountered a rather large fork in the road.

Just as with Todd (the patient in the story), Amyotrophic Lateral Sclerosis first took my ability to use my arms. It then weakened my legs, and I began to fall.

Things improved temporarily when I began using my power wheelchair, but then I had difficulty turning in bed and couldn’t get comfortable.

For me, at least, this is where the author and I began to split when she wrote,




“We’ve been in a war with ALS, always aware of my husband’s impending death (emphasis added) as I fight alongside him. We’re using every resource we have to survive. There is constant stress. There is trauma.”

Everyone knows there is no cure for Amyotrophic Lateral Sclerosis, however somehow the word “impending” implies a sense of immediacy and urgency that I have never personally experienced, even at the time of my diagnosis.

Amyotrophic Lateral Sclerosis , ALS, Living with ALS

Photo by Bakr Magrabi from Pexels

While I am keenly aware that my condition infringes greatly upon the personal freedom of my wife, who is my primary caregiver, I have never heard her express the “Woe is me attitude and negativity” that is so prevalent in the author’s commentary.

Living with ALS: Show up to life – the benefits of participation

 

Perhaps my wife and I are in denial or just being naive, but for us, anyway, we are too busy getting on with our lives and anticipating the next adjustment to worry or complain about what is ultimately inevitable, though hardly “impending.”

“We should have allies in this war against ALS,” the writer continued, “but it seems we end up fighting our durable medical equipment providers and home health agencies for resources. But it’s not their war — not really. They’re just mercenaries (emphasis added), and they’re not going to do what they don’t get paid to do.”

“Mercenaries”? That’s a little harsh to my way of thinking.

If that’s the writer’s definition of aid and assistance then bring on the mercenary hordes along with “all the king’s horses and all the king’s men.”

True, ALS “is not their war”, nor should it be. Just because I must personally deal with the affliction on a daily basis, doesn’t mean that my condition carries obligations for anyone else, professional or otherwise.

Read More of Living with ALS by Bob Taylor

Up until now, Amyotrophic Lateral Sclerosis has been winning the war, but ultimately it, too, will lose. If we continue to use all possible resources, we will eventually prevail, and I, for one, would love to be there to see it.

In closing I offer the wisdom of a Sanskrit poem followed by a completely unrelated chuckle:

Look to this day, for it is life,
The very life of life.
In its brief course lie all
The realities and verities of existence.
The bliss of growth,
The splendor of action,
The glory of power-
For yesterday is but a dream,
And tomorrow is only a vision,
But today, well lived,
Makes every yesterday a dream
Of happiness
And every tomorrow a vision of hope.
Look well, therefore, to this day.
May it be so for you. You make the most of your days. Well done.

And now for a laugh:




One Sunday morning, the pastor noticed little Alex standing in the foyer of the church staring up at a large plaque that was covered with names and small American flags on either side of it.
The six-year-old had been staring at the plaque for quite some time, so the pastor walked up, stood beside the little boy, and said quietly, “Good morning, Alex.”
“Good morning, Pastor,” he replied, still focused on the plaque. “Pastor, what is this,” asked Alex.
The pastor answered, “Well son, it’s a memorial to all the young men and women who died in the service.”
The two of them stood there quietly and somberly staring at the large plaque for several long seconds.
Finally, trembling with fear, Alex spoke in a barely audible whisper. “Which service,” he asked, “the 8:00 or the 11:00 o’clock?”
*************
About the Author:

 

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

Taylor is the 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

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

Follow Bob on TwitterFacebook

 

Lead Image: By Flickr user midnightcomm – https://www.flickr.com/photos/midnightcomm/447335691/, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=5596839Amyotrophic Lateral Sclerosis , ALS, Living with ALS

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.