CHARLOTTE, NC – One of the most challenging aspects of dealing with ALS is that each person’s journey is different. Regarding these radically altered life journeys, a key difficulty facing every ALS victim is this: There is no single frame of reference for comparing notes. Particularly when you also discover you are aging.
Support groups and coping?
Support groups are great for morale and encouragement in the social sense. Namely, that as diverse as our individual situations may be, there are similar conditions that all ALS victims share which are foreign to non-sufferers.
How we cope, however, is another story. This stems from our personal ways of approaching the affliction, combined with the individual attitudes and adaptations that are specific to our personal maladies.
Thoughts on that initial dreaded diagnosis
One thing is consistent, however. It occurs at the moment we learn of our dreaded diagnosis.
“You have a serious neurological disease called Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease and Motor Neuron Disease. We don’t yet know the cause of this disease, but it affects the voluntary muscles of the body. Your voice is slurry and your legs are not as strong as they once were. But we can give you medications and supports that can help minimize the symptoms. There’s a lot you can do to help yourself. Exercise and nutrition help maintain muscle strength. Some new medications will help your speech and mood. With our excellent support staff and therapists to assist you, there is reason to be encouraged. Together we can help you live a full, productive life and maintain a sense of hope for your future.”
The initial reaction to this news is always one of shock. In reaction, we expect the deliverer of this news to assure us we should not worry. And that we’ll soon get back to normal life.
But when the response we hope for doesn’t occur, the next obvious question is “How long?”
“Two to five years,” goes the usual answer. From that point forward, life and its quality become a race against time. And it gives an entirely new meaning to the notion of aging.
Never say “terminal”
For myself, I have rarely considered the “terminal” mantra of ALS. To me, terminals are railway and bus stations or airports. After all, aren’t we all slowly deteriorating in one way or another due to aging? Shouldn’t others encourage us to age well whether we are dealing with some life-threatening condition or not?
Upon reflection, when thinking about aging, I began to recall how many of my former supposedly “healthy” classmates have passed away just in the three-plus years since my diagnosis. It’s a bittersweet thought in its own macabre way. But, for me at least, other than the gradual loss of my physical dexterity, I feel no different than I did prior to discovering my ALS invasion.
ALS is wicked. It is a curse.
ALS moves ever so gradually that it sneaks up on you. One night you go to bed. only to awaken the next morning to discover that during your slumber the ALS gremlins have robbed you of some other routine task you were able to perform just the day before.
Aging well is generally described as accepting your age and abilities while adopting a wellness lifestyle and maintaining a positive attitude. So why not apply the same approach to living with ALS?
For me, quality of life has always been my goal, before and after ALS. I am convinced that that pursuit, more than anything else in my life, is the motivation behind my passion for travel and discovery.
Comfort is where you find it
Perhaps of more concern for my personal plight is comfort, which is now merely a relative condition. In a world where standing and walking are no longer options, the extent of my physical world has become one of sitting all day in a wheelchair or being in a prone position at night.
Thus, comfort is a matter of degree. Being uncomfortable is a condition resolved only by being less uncomfortable at any given time rather than being truly comfortable.
None of that has any relationship to quality of life, however. Quality of life is determined, from my perspective, as choosing to remain engaged in life, maintaining a sense of humor and staying in touch with as many friends, neighbors, and relatives as possible.
If you look at ALS in those terms, then perhaps we could expand the acronym to: J – ALS (Just A Little Setback).
In the meantime, I offer a bit of ALS food for thought. My goal remains my will to continue to ripen with wisdom as I continue aging like a fine wine, just like everyone else.
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 a 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