Living with ALS: Encountering the good, the bad and the ugly
CHARLOTTE, NC. Before being diagnosed with ALS, I must admit I was guilty of a lack of awareness of the problems facing disabled patients. Since that time, actually living with ALS, I remain uncertain whether the compassion of others is directed toward me. Or if people, by nature, become kinder toward any and every disabled individual they encounter.
I suspect the latter holds true.
But recently, I found myself struck by the generosity and goodness of strangers whenever our paths happened to cross.
Unfortunately, there’s a flip side to my thoughts on the topic. As someone living with ALS, it leaves me wondering if some people even have a clue as to their own personal selfishness.
Living with ALS: The Good
Beginning with examples of the good, I currently display two stickers on the back of my motorized wheelchair. One represents my career in professional baseball. The other memorializes my time in the United States Marine Corps. I find it amazing how many times people see the Marine sticker and thank me for my service. But as yet, no one has ever thanked me for being a baseball player.
As a breakfast lover, one of my favorite times of day is my daily outing to meet friends for coffee, eggs and fellowship. During a heavy downpour late last week, we stopped at a fast food restaurant rather than heading to our usual place.
As we backed the wheelchair out of the van, one the restaurant employee came up. Holding an umbrella, he asked if we needed any help, which we immediately accepted.
Upon entering the restaurant, another alert employee noticed the Marine sticker on the back of my chair, asking if I had been in the service. When I gave him a positive response, he thanked me, and then returned to his chores. In the end, the young man comped our breakfast as a personal gesture of thanks. A random act of kindness that was totally unexpected and yet greatly appreciated in more ways than one.
Oddly enough, the following day, we went to another of our favorite breakfast haunts. As we were ordering, a heavyset woman sitting at a back table in the corner came up and handed us some “gas money.”
Completely out of the blue, this gesture, once again, proved totally unexpected. As the anonymous donor departed, we thanked her for her kindness, finished our meals and prepared to leave. As we headed to the register to pay, we learned our meal had been paid for by that same mysterious lady who had disappeared into the morning sunshine never to be seen again. Generosity like this often makes living with ALS a little easier.
Living with ALS: The Bad…
These are just two examples of numerous incidents where people rush to hold doors open or move tables to accommodate my chair. Or, for that matter, any number of other gestures of pure kindness that can be overwhelming at times to internalize.
Contrast that, however, with a complete lack of awareness on the part of others. They seem so self-absorbed that it becomes equally difficult to understand their selfishness.
At one time or another we all end up stuck in traffic. There, for whatever reason, some drivers think they are more important than the rest of us. As when drive down the shoulder to move to the front of the line. In the process, they add to the congestion. Why? They eventually have to merge, which slows down all the traffic in the back.
…and the ugly
The same holds true for handicapped parking spaces. Good reasons exist as to why parking lot owners add extra striping between designated disabled slots. Those reasons do not include creating an extra parking space for non-disabled people. Nor does this extra space exist as very short-term parking for someone to run into a restaurant to grab their “take-out” order when they’re in a hurry.
Neither are those spaces designated to offer more room for poor drivers who do not possess the skills to park properly.
These generously lined spaces exist so that handicapped individuals or their caregivers can open ramps for wheelchairs to get out of the specially adapted vehicles that accommodate those with disabilities.
A T-ball outing turns ugly. And dirty. Because of very important people
On the same Saturday following our delightful breakfast experience, we traveled to watch my grandson play T-ball. We pulled into a handicapped parking area and unloaded the chair as close to the playing fields as possible.
As we departed the game to head for the van, we saw that a non-disabled fan had chosen to park so close to our vehicle that it proved impossible to lower the ramp to enter our car. To make matters worse, there no easy way existed allowing us to maneuver past the other car on the right. That left us with only one option: to drive through the mud to the left to get to gain enough space to access the van.
When we returned home, it took no less than two hours to remove the accumulated grime from my wheelchair to make it serviceable enough to get into the house.
The whole sequence of events was totally unnecessary and should not have happened. But it was entirely the result of someone who believed they were more important than everyone else and should not need to endure the inconvenience of walking a little more than they desired.
Maybe very important people need to learn a thing or three about others
Warning to those self-important people: We are now printing up flyers you will soon find affixed to your windshields whenever you choose to reject the common courtesy of considering the plight of disabled travelers. And consider yourself lucky. Someone even more mean-spirited would very likely “key” your car for such an indiscretion.
Disabled people greatly appreciate any and all courtesies and kindnesses from compassionate strangers. We do not expect our meals to be paid for. However, such gestures do not go unnoticed. Particularly by this ALS patient.
At the same time however, each of us is keenly aware of the infringements upon our conditions by healthy people who believe the rules do not apply to them.
All we ask is a little awareness, and we thank you for paying attention.
— Headline image: Handicapped parking space. Image via Pixabay.com, public domain, CC 0.0.
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)
Read more of Bob’s journeys with ALS and his travels around the world
Editors Note: Support Bob’s GoFundMe to give him a hand up