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

Written By | Jan 5, 2020
life, ALS, Living With ALS, Participation, David Nivens, Lou Gherigs Disease,

CHARLOTTE, NC: Woody Allen, the prolific screenwriter, movie director and comedian, once said that “Showing up is 80 percent of life.” For those of us with ALS, that percentage is probably higher.

The more familiar name for ALS, at least in the United States, is Lou Gehrig’s disease.

The man who was known as the “Iron Horse” thanks to his resilience on the hallowed ground of Yankee Stadium in the Bronx of New York, succumbed to the affliction of ALS at the age of 39.  Long before anyone had a clue about its devastating life-robbing effects.

David Nivens

In Europe, ALS is better known as “David Niven’s Disease” because of the ever dignified and elegant English actor. The author was so popular and well known.




Using a false name to avoid publicity, Niven was hospitalized for 10 days in 1983 in Switzerland. He returned to his chalet at Château-d’Oex where his condition continued to decline. Refusing to return to the hospital, Niven died from ALS at the age of 73 at his chalet on July 29, 1983.

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Given the actor’s public dignified persona, it’s easy to see why Niven preferred privacy over a less public demise. In addition, the erratic nature of ALS frequently dictates the decision-making process, thereby making difficult to fully analyze Niven’s choice within its complete context.

Under normal circumstances, however (“normal” being a relative term), it is probably a better option to pursue Woody Allen’s mantra and remain engaged whenever possible.

Pluses of Participation

The process of participation can be, and usually is, irksome for the ALS patient. It can also be inconvenient for the healthy assistants who are providing aid. However, engagement with carpe diem intent is key to longevity. Oftentimes, participating in life can be a stop-gap for the mental lethargy that can occur due to the complications of ALS.

They are slightly more time consuming to be sure, but powerfully beneficial in the long run.

Rather than becoming a recluse who seeks solace in the womblike comfort of solitude, involvement is a far better choice for dealing with ALS’ relentless internal life-robbing progress.

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Back in the day, when I was well beyond being on the “verge” of obesity and just plain old overweight, I had to force myself to get to the walking track and exercise equipment even though I always felt a hundred times better after a solid session of exertion.

Engagement with ALS is a similar experience.

The easy way out is to maintain the security of isolation but, ultimately, that is generally the least productive solution for dealing with it. Worse it can speed the onset of the development and worsen cardiovascular disease, heart attacks, autoimmune disorders, high blood pressure, cancer, and slower wound healing. Which are but a few of the additional debilitating consequences one can encounter.

In the words of Woody Allen, “showing up” to life is a major component of slowing the internal confrontation between the brain and the nervous system created by ALS.

As with my former exercise regimen, whenever I opt for involvement, I reap rewards regardless of how small the experience.



True, there are occasions where the combination of wheelchair perambulation and a room crowded with bodies that can be uncomfortable as well as overwhelming, but the alternative of non-participation is self-limiting and undermines my personal sense of worth.

Granted there are times which are socially frustrating.

My ability to speak is gradually disappearing so I now speak in whispers which must often be repeated.

I am no longer able to hold my head up without the aid of an uncomfortable brace. Nor am I able to feed myself without assistance.

Despite those and other small inconveniences, I usually discover that the exertion required to participate is far less than the apprehension I fretted over, and I typically emerge unabashed. I joined in on life.

One ALS victim described those moments of sharing a laugh, providing moral support or offering a contrary opinion, contributing circumstantial wisdom, inane chit-chat or even unknowingly setting an example for rising above the tribulations as “Mental Souvenirs.”

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With that said, it’s time for me to get out and about. Even when it’s not Christmas those “Mental Souvenirs” are an inexpensive year-round commodity and I have become an avid collector.

It’s time to go shopping…ALS style!

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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 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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Lead Image: Photo by Ronê Ferreira from Pexels

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.