Living with ALS: Guidelines for moving forward efficiently
CHARLOTTE, NC, October 6, 2019 – Sometimes I imagine myself in camouflage fatigues fighting an invisible creature called ALS. More commonly known as, Lou Gehrig’s Disease.
The truth is, that although ALS is a daily struggle that resembles a war, that’s where the similarities stop, because, in the end, the affliction is going to win.
As one patient put it,
“ALS and efficient are two words not often used in the same sentence.”
What he means is that regardless of the workarounds you create, ALS will ultimately work around your workaround and force you to rethink your options. It’s rather like playing chess with a relentless disease that is undefeated and has every intention of remaining that way.
In that sense, the only way to counter the inevitable is to yield to its reality and then to adjust and adapt accordingly until the next wave of change occurs.
That is not to say that you give up. The distinction is subtle but, to my way of thinking, it means that ALS patients should accept the inevitable. Thus conserving their energy for the mini-victories they can accumulate that will prolong their quality of life.
By merging “efficiency” with all the ugly barriers ALS creates, I have now filled my daily routine with priorities that suit my current lifestyle.
If there’s one lesson that can be learned from ALS, it’s that without warning, we realize there is too much to do and not enough time to do it, even though we cannot know for sure how much time actually remains.
It’s rather like trying to see all of Europe in three weeks before realizing that you will never see it all no matter how many times you return.
My first priority has become the mantra that my self-worth is not defined by my health. Fortunately for me, perhaps not so much for others, ALS does not affect my brain and my ability to think.
So as I steadily progress each week into a new state of “vegetation”, regardless of how I appear to others, I remain as individual as ever before. As Halloween approaches, I am gradually becoming your worst nightmare as I morph into becoming an avocado with a brain or a potato that thinks or a cucumber with opinions.
Somethings remain the same – even with ALS
Other than my inability to ambulate (my big word for the day. George Will has nothing on me!), and the lumpy positions I must assume in my motorized wheelchair which make me look like Jabba the Hut, physically I feel no different than I did pre-ALS.
Clearly some things are no longer within my realm of possibility such as an invitation to appear on Dancing with the Stars, but that does not diminish my goals, dreams, and aspirations.
If I write a book about my experiences playing baseball, the title might now become Wheeling Around the Bases but, other than that, little else would change.
In short, as another ALS patient reminded me,
“No matter what my health is, I know I can still have a purpose.
I can make a difference and live a happy, fulfilled life.”
“Life goes on,” so they say.
My ALS life is my new normal, and the best way to challenge it is to accept it for what it is.
Rather than fight the reality of ALS, it is better, for me at least, to simply go with the flow. To paraphrase William Shakespeare’s Hamlet, “It’s better to be, than not to be.”
The guidelines for making ALS efficient are simple and easy to follow:
Establish a daily routine of habits that work for you to accommodate the ebb and flow of your energy
Learn to say “no” more often, without feeling guilty
Most important, find joy in each day
It’s all about efficiency. They say that “ALS and efficiency don’t mix”, but technically neither do oil and vinegar. When they do, however, they sure make a mighty fine salad dressing.
Read more of Bob’s Living With ALS here
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