Living with ALS while avoiding life’s bumps in the road
CHARLOTTE, NC: In the world of ALS, the journey is long and the highway is filled with potholes and speed bumps. Ultimately the road becomes a dead end with no possibility of repair, so the driver of the ALS bus must constantly seek ways to avoid as many hazards as possible.
The worst things that break up the rhythms of a daily routine are unexpected problems that arise which are also a hassle in the normal scheme of things but become magnified by ALS. Like the dishwasher breaks down, a leaky roof, the cable television doesn’t work properly or the printer won’t print.
The tasks of getting back to some semblance of a routine become more time consuming than usual and that is where we are most deeply challenged to keep our sense of humor and patience.
Game of Thrones
Season 8 of Game of Thrones reconvenes its medieval Dungeons & Dragons mega-fantasy in mid-April. I tried watching it from week to week when the series began, but I was quickly swallowed by the ever-increasing cast of characters and multiple plot-lines.
It didn’t take long for me to become lost.
With the new season on the horizon and considerably more time to invest, I have begun binge-watching the previous seven seasons. While I still find myself asking who a certain character is, without the week-long separation between episodes, I have developed a far greater appreciation of the various stories.
One thing I discovered, however, is that there have been considerably more battle scenes in later seasons, of which some have been overly long and far too bloody for my taste.
I prefer Tyrion’s ready wit to the slash and burn realism of cutthroats and massive mega-battles.
Another aspect I had never considered before is that now main characters are dropping dead so quickly from poison, hanging, stabbings or beheadings at such a high rate that the writers are having to reincarnate some of them in order to maintain a cast.
Attrition significantly reduces the number of roles that I am now dealing with only about a third of the personalities I struggled with at the outset.
It’s rather like watching one of those professional wrestling free-for-alls where the winner is the last man standing.
So what does Game of Thrones have to do with ALS?
Well, many people see the disease as a “battle.” It’s not. A struggle with speed bumps, yes. A battle, no.
ALS is going to win. That’s a given.
Getting up in the morning and bemoaning the limitations created by an intrusive enemy is not a solution. It only aggravates the frustrations.
Mentally, physically and emotionally, the best thing to do, for me at least, is to accept the conditions I’ve been given and to focus my energy on what I can do, not what I cannot accomplish.
Unlike Khaleesi, I do not have dragons that will come to my rescue. I have demons I must personally challenge along with the aid of dedicated loving caregivers who can ease some of the angst.
This past week alone, we moved my bed into my office so I no longer have to walk as far to get from one place to another. The biggest fear being a disastrous fall which the new arrangement minimizes.
We also installed a remote doorbell so I am able to push a button in the middle of the night to call my wife. I resisted waking her up for several months, but now, after several 911 calls to the local fire department to get me off the floor, we have decided the new system is far better.
In the process, I have come up with a three-point plan to minimize hassles and maintain some level of quality of life.
First, I do my best to focus on only one thing at a time. Through experience, I know that when my house begins to look like Grand Central Station during rush hour, which is often these days, the activity is overwhelming. I am unable to think coherently and make good decisions.
The best thing is to tune out, take a breath and recoup.
At the risk of sounding like a scratched CD (I suppose there are no longer any broken records), I look for ways to adapt. Even if my ideas are way off-the-wall, they keep my mind active and that’s important.
Finally, again I repeat what others so often say: I seek out projects that give me a purpose. It doesn’t matter, really, how long term they may be or that I may never finish. It is only important that my mind is kept active.
The Great American Novel
For years I have wanted to write a novel but could never come up with a good story. Of course, it would have to center around travel but for whatever reason, I had the “block” and never found the yarn I wanted to spin.
Following our visit to Belgium and France last fall, I had a plot epiphany. I have begun working out the various nuances of the story. Time is the killer for me now, but at least the idea exists and that’s what matters most.
One thing I know it will not be about, however, and that’s a Game of Thrones sequel titled something like “Bob White, and the Seven Dwarfs Plus One Giant and Three Dragons.”
Nor will it be about bumps in the road. I simply take those as they come.
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
Keywords: ALS, Life With ALS, Living with ALS, Game of Thrones, Bumps in the Road, Bob Taylor
Lead Image: Pixabay – CC0 License