CHARLOTTE, NC: One of the most important lessons I have learned about accepting life with ALS is “to keep on keeping on” with everything I did in my life before “the invasion” until the affliction takes it away. After that, I’ll adjust until I am somehow able to find a suitable compromise.
In a sense, it has become a way of compartmentalizing my life in an effort to keep it as balanced as possible. It’s not ideal, but neither is ALS. Then, again, efficiency and ALS are two words that rarely appear in the same sentence. They are simply not compatible.
Here’s how “compartmentalization” works…for me at least.
I have written about my breakfast group in previous columns. We are known as the ROMEOs, which is an acronym for “really old men eating out.”
The group formed about 50 years ago, give or take, and it was one of those serendipitous things that just sort of happened. For half a century the ROMEOS have been gathering for breakfast every day, rain or shine with weekends and holidays included.
Over the years the group has morphed through attrition or new additions but the philosophy of solving all the world’s problems before mid-morning has remained the same since Day I.
A lifelong habit
I don’t remember when I joined the group because it was so long ago. Back when the girls saw us as Romeos, instead of ROMEOS. However, I have been a loyal participant for years. Even when I was living in Saudi Arabia in 2003, I dropped in to see the guys during a three-day break in the middle of my tour.
They were still there. Same faces. Same problems. Same solutions, but it was comfort food for the soul.
In recent years the group has dwindled a bit as three of the most regular chaps no longer come due to health issues. Thus weekends are no longer meeting days and holidays are now simply holidays.
That said, I still show up during the week and if, by chance, ALS invades our conversation, which increasingly more frequent, my buddies adjust their focus until the moment of crisis has passed and then we shift our attention back to discussing the day’s highlights.
It has almost become routine these days, but my pals just wait patiently until I am able to proceed.
That’s what I mean by “compartmentalization.”
It’s not a perfect solution but everyone “gets it” and that makes a huge difference emotionally and psychologically for me.
“Compartmentalization is not about being in denial; it’s about putting things where they belong and not letting them get in the way of the rest of your life,” says author Barton Goldsmith.
For me, the key is to accept my new normal. Rather than fighting the reality that I have ALS, I long ago decided to give in and accept it. To just to “be” and to go with the flow.
Though my health is precarious, life continues. Unlike many crises, I cannot pause, rest and recover while I wait for things to get back to normal because the reality is that they never will. Therefore, if I am to live, I must find a way to exist amid the madness of ALS.
My self-worth is not defined by my health. No matter what my condition may be at any given time, I know I still have a purpose. I can make a difference and live a happy, fulfilled life.
Life often feels fragmented these days, bouncing from emotion to emotion, but it sure as hell beats the alternative of living in denial.
ALS is my life now, so I will continue to just keep playing the cards I am dealt with.
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