CHARLOTTE, NC, May 19, 2019 – There’s a wonderful scene in the 1957 film The Spirit of St. Louis where Jimmy Stewart in the role of Charles Lindbergh poses a question to a housefly. Ever conscious of extra weight, Lindbergh encounters a fly in the cockpit of his plane. To pass the time, he contemplates whether the fly, when airborne, adds weight to his plane or if it only matters when the fly is walking around on the instruments.
It’s not unlike the old question about whether a tree makes a sound when it falls in the forest and no one is around.
Since my diagnosis with ALS I have encountered a slightly similar dilemma in which I am unable to determine whether my days have become longer or shorter.
What used to be normal daily activities such as brushing my teeth, taking a shower or getting dressed certainly require more time to accomplish, but the question then becomes “does that add time to my day or expedite it?”
When writer Dagmar Munn learned of her ALS in 2010, she quickly discovered what she terms “Aha” moments which were made up of 50% pride and 50% denial.
ALS patients are typically aware and accepting of the plight of their new existence.
However, many of us, myself included, will fight to the bitter end to retain as much independence as possible, and therein lies the denial.
It’s not so much a matter of lack of acceptance of the condition as it is knowing when you must eventually yield and adapt. Some of the best advice we were given early on was to anticipate what is coming and be prepared to deal with it when it arrives.
In many cases, the real eye-opener comes when patients become all too aware of safety issues that take control of their lives.
At first, when I was more ambulatory than I am today, my favorite time of day was rising early, taking a shower and getting into fresh, clean clothes before breakfast.
Now, however, with the need to use a shower chair, the struggle to get in and out of the shower has become such an ordeal, that I will do anything to avoid the process.
For me, it is one of my great regrets. Or losses. Because that warm spray of refreshing water and soap was one of the highlights of my day.
Giving into to or adapting to ALS
Initially, Dagmar Munn opined that using a shower chair was, in a sense, giving in to ALS and she was, therefore, reluctant to use it.
She later had a change of heart. “Was I giving up?” she asked. “No. I am staying in control of how I function in my environment.”
One aspect of the condition I am still assessing is whether my body is giving me warnings about impending changes. Recently I noticed intense itching in the small of my back for which no amount of assisted scratching provided relief.
It eventually subsided, only to discover a few days later that I was no longer able to walk.
Now I am confronted by similar itching which makes me curious to know whether this is a precursor to a new stage in my ALS journey or merely poor posture. In other words, am I being told to prepare for another “Aha” moment? Hopefully not since I am already part human and part vegetable as it is. Only time will tell.
In the meantime, I am now following a simple three-step adaptability program that Dagmar Munn uses when those “Aha” moments arise: “assess, adapt, and accept”
“Assess: Look at the situation realistically, not emotionally.
Adapt: Keep an open mind.
Accept: Stay positive and focus on the goal.”
As Mann suggests, if you heed what your “Aha” moments are telling you, it is far easier to adjust to the new challenges of ALS.
Though difficult to say which is most important, based upon personal experience, the key to a longer, more productive quality of life is “remaining positive.”
Who knows, one day one of us may wake up one morning only to learn that the “Aha” moment for that day is the news that someone has developed a cure for ALS.
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 (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up