CHARLOTTE, NC,: Some people describe their diagnosis with ALS as being given an “invisible expiration date.” Or being placed in the “ALS waiting room.” If we are honest, the healthiest people have the same condition.The only difference is they don’t deal with a debilitating disease every day.
Nevertheless, the “invisibility” factor is still in that “waiting room.” The biggest difference is a greater awareness of a sense of urgency for someone with ALS.
Working around ALS by finding our purpose
ALS patients are constantly inventing workarounds. In a way, it’s like trying to second-guess the next move a terrorist will make and then figuring new ways to avoid it. The problem, of course, is that the terrorist has the edge.
Each day for ALS patients brings a fresh supply of adaptive equipment. It’s almost like celebrating Christmas every day only Santa Claus drives a brown truck with UPS written on the side.
The secret to survival is finding purpose in our lives.
If we fail to find meaning, then all that equipment is virtually useless. We need to find things to do, places to go and people to meet. We need to find normalcy in an abnormal world.
President John F. Kennedy made a famous remark during his inauguration speech in the 60s when he said:
“Ask not what your country can do for you, ask what you can do for your country.”
My ALS paraphrase of that statement is,
“Do not be overwhelmed with what you can’t do anymore, but consider what you can do.”
Say that when you get up every morning, and it will make a huge difference in your attitude.
Purpose is an individual concept.
Each of us has our own definition. Whatever that may be however, it needs to be something that makes a new day worthwhile and provides a sense of satisfaction and accomplishment.
For me, it is writing a daily column, talking about travel and arranging tours. I never consider that the trip might not take place. Planning is an important thing and the logistics are challenging enough to occupy my mind.
Anyone who has followed the HBO television series Game of Thrones will know exactly what I am talking about when I mention that I am now binge-watching the program just to understand it.
That may not sound like a purposeful project, but believe me, just keeping track of the characters is a major undertaking.
When the series first began, our Communities Digital News family used to watch the shows together and comment about them as they were in progress. That was fun.
Start at the beginning
My first mistake was starting with Season 1, Episode 3 which meant I was already way behind in the nuances of one of the most nuanced shows in television history. Trying to understand the relationships between dwarfs, dragons, family feuds and how they all interconnected threw me for a loop.
What I have learned during my daily binges is that a week-long separation between episodes forced me to spend the first ten minutes of each new show trying to re-orient myself to the myriad of personalities. Then, just as I thought I had it figured out, in would enter someone new and I had to start all over again.
Admittedly, I still have difficulty with new characters, but at least I now get the gist of the overall relationships of the primary story.
It’s like reading the Bible and trying to figure out who are the Israelites, the Moabites and the Mosquito-bites.
Now and then a household project will arise that also keeps us busy.
For me, many times it feels as though I am playing a solitaire version of Twister. But last week it turned into more of an episode of the Keystone Kops or Laurel and Hardy.
After several attempts to make my printer do what it was created to do, we decided it was time to buy a new one. Besides, the ink was low on the old device, so it would be cheaper to replace it than to get new ink.
Purchasing any new electronic equipment is a life-altering adventure for me, even when I did not have ALS. No longer is it possible to simply plug in a machine and hit “ON” or “OFF.” That’s too simple.
I, therefore, knew the printer installation was a nightmare looming in a fancy box.
As with all things tech related these days, the first half to two-thirds of the process went smoothly. Until somewhere during the installment program, my comprehension of English went astray of the instructions.
Time to call the dreaded “Geek Squad” Dreaded because it meant four hours of talking computeeze before arriving at a solution.
Since I have been rendered useless by ALS, my wife had to do all the bending, plugging, unplugging. She handles the searches for IP addresses and user codes. Then there were passwords containing an upper case letter, lower case letter, number, symbol and the name of Rumpelstiltkin’s first-born child.
Did I mention that she was also suffering from vertigo at the time?
In other words, about 25% of two adult human beings were functional enough to crawl in months of accumulated dust and mangles of wires in search of serial numbers and mysterious codes.
In the end, we solved the problem.
The telephone cable had simply come unplugged. We didn’t need a new printer after all, but now we had one…with, of course, a fresh supply of ink.
And you guessed it. It only took four hours,
So you see, having a purpose is truly a healthier way to live, both mentally and physically. When reach a milestone or complete a project there is great satisfaction.
Just plug it in and hit “ON” or “OFF.”
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)
Editors Note: Support Bob’s GoFundMe to give him a hand up