CHARLOTTE, NC, April 23, 2017 – I remember counting the days on the calendar when I was living in Saudi Arabia, trying to do everything I could possibly think of to shorten my time there.
With ALS, days come and go faster than slower. Even the seemingly endless sessions at the clinics that range from five to seven hours end all too quickly in the long run.
It was time to get measured for an electric wheelchair this week. That sent me 40 miles up Interstate 85 to the VA hospital in Salisbury. The campus is huge. Perhaps four or five times larger than the facility in Charlotte, but we managed to find our way to the appropriate place.
In the end, the experience was almost like test driving a new car with the only difference being that the salesmen come to you. I met with four reps from various companies, each trying to “sell” his product by explaining what was unique about his individual chair.
The first chair was extremely comfortable but the salesman was at a huge disadvantage because he had mounted the steering toggle on the right and I am left handed.
The other problem was the newness of the mechanism had me crashing into walls and yelling to people to get out of the way even though I was only going about two or three MPH at top speed.
We began using the first of four settings on the guiding system. The rep had it programmed to read “Nice and smooth.” He probably should not have let me see the next level which was called “Jack Rabbit.” I was not inclined to discover what the next two stages were.
Although I later learned that all the seats could be modified, I eliminated chair number two because it felt cramped. I have been on enough international flights in a tight fitting airline seat to know that I do not want to spend the final days of my life hoping to be pressure-popped out of an electric wheelchair.
At last, in my best Monty Hall spirit, I selected Number 3. I liked the toggle for one thing, but more than that I thought the ability to raise the seat to eye-level so I can speak to someone while we are walking was a nice feature.
In truth, they were all about the same and could all be easily modified to suit the needs of any patient. Having a computer table and a place to eat were especially good aspects.
Following that ordeal, I had another appointment scheduled so that I can modify my bathroom to accommodate being able to shower and shave. Much like the session with the VA doctor about ALS, this meeting was interrupted quickly when I was told, again, that I do not qualify, or, at least, so far I am not qualified because the VA has yet to make a decision.
One way or another, I can accept the final outcome, but the frustration lies in the fact that the second meeting had been actually arranged by VA personnel using their own guidelines, which makes the entire process seem like some elaborate cruelty joke.
“Oh yessir, you qualify. We’ll set that up for you right away.”
The load is lifted and I feel independent again. Then the phone rings.
“Oh yes Mr. Taylor, we see you are going to Salisbury on Monday. We can have the agent meet you there after you pick out your wheelchair and get you all set up and ready to go.”
Then we hit the wall when the rep arrives to say, “Your records are not in the system. There’s nothing we can do until we have authorization. Sorry.”
And so as they say, “the beat goes on.”
Though I was slated to go to the “clinic” (a word I now dread), I had another appointment on Wednesday in Charlotte to see if I qualify for an experimental program that has been the subject of on-going research for six or seven years.
Other than the anxiety of getting poked by a needle and lying still for three hours for five straight days, I am certainly willing to do whatever I can to defeat the ALS nemesis.
Better, for me anyway, it meant the “clinic” on Friday would be shorter.
I arrived just before 9 a.m. and went to the door of the ALS building. Suddenly, for no reason, I stopped. Then, within seconds, I found myself uncontrollably walking backward into the rain without being able to stop myself.
ALS staff came running from every direction and once I could sit down to anchor myself to a chair I was fine.
There was no dizziness. I did not black out or faint, yet suddenly I became Michael Jackson “moonwalking” my way around the ALS parking lot.
“Understand you had a little case of ‘retropulsion’,” said my doctor later. “It happens with ALS. Not much you can do. Just try to control it as best you can.”
With that thought in mind, my next stop will be shopping for a single white glove I can wear on one hand. Now that should be a “Thriller!”
Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)