Living with ALS: Reminiscing about healthier days and new found tolerance
CHARLOTTE, NC,: Sometimes I wonder what life would be like, or would have been like, without ALS. Both of my parents lived well into their 80s and supposedly the palms of my hands have very long life-lines. But when your diagnosis gives you “two to five” years, it sort of all goes out the window.
So far I have beaten the ALS under, which makes my newest goal find a way to out-live the over.
Travel has been my passion for over half of my life.
Looking back, in the early going at least, I somehow managed to find a way to generate enough personal income and to see the world on somebody else’s nickel. I never got rich, but I paid the bills and in the end, if you can finish your life by breaking even or better, then you can call it a success.
I used to refer to my life in those days as being “PTR on OPM.” (Translation: “Part Time Rich on Other People’s Money”) The reality was that I was a “travel whore.”
Back in the day, when newspapers were still a legitimate media force, being a travel writer carried a bit more prestige than it does today. With the evolution of the internet and blogging the industry has drastically changed. Writers like myself, with expertise in print rather than electronic media, were quickly struggling in the ensuing undertow of the media tsunami.
That said, without the treacherous debilitations of ALS, I likely would never have found the time to visit 11 new destinations including Panama, Alaska, Bermuda, Bali, Lombok, China, South Korea, the Philippines, Vietnam, Taiwan, and Hong Kong. I also revisited France, Belgium, Switzerland, and Italy for a total of 15 countries, 11 of which were for the first time.
Not bad for a wheelchair ridden ALS Gimp.
Still, it’s easy to ponder a hypothetical life after four years of struggling with my ALS condition.
My wife has evolved into the ultimate caregiver, and like the concentric rings emanating from the center of a tiny stone falling into a perfectly calm lake, each ring infringes more and more on the lives of others.
Gradually ceding my independence to others has personally been one of the most painful aspects of dealing with ALS.
Recently a friend asked me, “If you could go back to who you were before, would you?”
Strangely enough, it was a difficult question to answer. From a physical standpoint, it would be a simple response, “In a heartbeat, without question.” No more clinics, no wheelchairs, no drinking wine through a straw, no choking or coughing at every meal, again having the ability to write or use the phone or brush my teeth or dress or even do something as simple as scratch my ear.
On the other hand, ALS, like travel, has allowed me to view the world through new eyes.
Years ago my wife went on a mission trip with our church to Kenya. She had never traveled to a Third World country with me or anyone else because she had no desire to visit some of the ugliness of our planet. For her, travel was supposed to relaxing, fun and adventurous.
I made her go, even though we couldn’t afford it.
“You go to church on Sunday,” I said, “and you pray for the poor. Until you go to Kenya, you don’t have a clue about REAL poverty. Poor in the United States isn’t the same as the poor in two-thirds of the rest of the world. Poor in our country isn’t fun and it is a struggle, but for the most part, it is not a daily grind to literally survive. Dirt floors, corrugated tin roof huts, raw sewage flowing through the streets and scrounging for maybe one measly meal a day IF you’re lucky, now THAT’S being poor.
“You go,” I said, “and when you come back the world will be different because this experience will be life-altering.”
Shortly after she returned from Africa, I started calling my wife “Popeye” because Kenya showed her a world far beyond an American slum with its HDTVs and a cell phones for each member of the family.
In a similar way, ALS has taught me to have greater empathy and respect for disabled people.
“Handicapped” is no longer politically correct for some reason. I say, “Why not handicapped? That’s what they are.”
I sure as shootin’ know that I’m “handicapped,” and I am “disabled” as well. The words should be synonymous.
If a handicap is good enough for a golfer or a bowler, it should most assuredly be acceptable for someone with a disability. Tolerance is a wonderful thing. The world could use more of it…in abundance.
Since my diagnosis and confinement to a wheelchair, it is amazing to me how many strangers will arbitrarily walk up to me and thank me for my service in the Marine Corps in the mid-60s. For me personally, it’s embarrassing because so many others did so much more including making the ultimate sacrifice.
Rather than attempt to explain I just say “Thank you” and accept the tribute in honor of those who actually did experience the horrors of Vietnam.
That’s perhaps a long-winded way of expressing whether I would gladly return to my pre-ALS life.
Indeed I would with the proviso that I would be able to retain my respect, knowledge, and empathy for the “handicapped” among us.
In that sense, I profoundly shout, “Let’s go out and win one for the ‘Gimpers’!”
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 founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up