Living with ALS: A lesson in what to say and when to say it
CHARLOTTE, NC: Ever since the days of my youth playing professional baseball I have been keenly aware of what I consider a serious character flaw within myself. I have since discovered that many other people struggle with the same affliction of not knowing the proper thing to say in a sensitive situation.
Unfortunately, the problem has two sides because in most instances there is genuine heartfelt concern and empathy with trying to find the right thing to say while, at the same time, no matter how well-intended that “right thing” is oftentimes the “wrong thing.”
“My uncle also had ALS, and he only lasted 4 years.”
It’s an easy trap to fall into because, in their concern, people often resort to trying to relate to your plight.
The truth is that while I enjoy meeting other ALS patients in various progressions of their disease, I have little interest in knowing the intimate details of someone else’s struggles. Especially if someone who is healthy is presenting them.
It usually tells me that they don’t understand ALS. From the variety and severity of symptoms to the age of onset, each person’s journey with ALS is unique.
The point was dramatically driven home to me recently when I recently received some stunning news.
“How long do I have?” I asked the neurologist after receiving my ALS diagnosis.
She replied with a standard response that seemed to be rather blunt and cold at the time, “Two to five years,” she answered without emotion.
Fast forward four and a half years to one of my quarterly visits to the local ALS clinic.
As I was leaving the clinic I inquired about the doctor who had seemed so distant when she revealed my condition to me just a few years earlier.
“She died six months ago,” answered the nurse. “Cancer. She was only 58.”
Needless to say I was stunned. Then I began asking myself whether or not the doctor was aware of her own situation at the time she gave me my bad news and if that was the reason she was so curt.
And so today, I politely listen as my brain madly works to erase the image of my invisible expiration date that is being stamped on my forehead.
What to say:
Simply say, “My uncle also had ALS so just let me know if I can ever be of help.”
“You are such a hero.”
Sounds nice, but it’s totally inaccurate. I didn’t choose to have ALS. It doesn’t take a hero to get the disease or even to summon the courage to fight the battle. Like any other ALS victim, I’m simply a person who decided to be optimistic and to continue to participate in life to the fullest for as long as I am able.
The TRUE heroes are the caregivers who devote so much of their personal healthy lifestyles to ensure that I receive the maximum quality of life during my quest to survive for as long as possible.
Change the word “hero” and substitute “role model,” because being a role model is a choice over which I have control.
“Send me a news article about the latest ALS discovery or ‘cure’.”
Most likely, the news is old, the miracle cure is spam or it’s for the wrong disease — multiple sclerosis is not the same thing as ALS.
When the news does break about a preventive breakthrough in ALS or, better yet, a cure, believe me, you’ll know it immediately.
What to say:
My weekly column is my best source for sending out up to date developments in ALS. I’d rather receive e-mails from you with inspirational messages, humorous stories, anecdotes or personal testimonials that I can include in my articles.
We can’t control the things people say to us and someone, somewhere, is bound to make a thoughtless, no matter how unintentional, remark.
Our choice is to either avoid people, which actually may be a temporary benefit of the Coronavirus precautions or learn to cope and offer them a learning experience.
Admittedly I plead guilty to being one of the many among us who do not possess adequate skills to express condolences or concern for those in crisis. It’s an art to do so properly, and one that I personally need to embrace.
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