CHARLOTTE, NC. The great American poet Emily Dickinson once wrote that “‘Hope’ is the thing with feathers.” If that definition holds true, then the world of ALS is a never-ending battle of hope, even if this debilitating disease is truly “for the birds.”
One thing is certain. There’s no such thing as a dull day with ALS. As one patient accurately described it, he lives with the knowledge that “(his) prior breath may be (his) best.”
ALS is indeed a constant battle of Hope
ALS is a transitional disease. You know going in that changes will occur. You are already aware that you are gradually morphing into something you no longer recognize, yet you are powerless to stop this progression. ALSt is in its own way a “Dr Jekyll and Mr Hyde” condition. Your body becomes an ever-changing, ever-shrinking prison with a still-functioning brain that you must constantly use in a positive manner.
What was once a world of buttons and zippers eventually evolves into a land of VELCRO. Eating becomes an exercise in chewing and swallowing and, oftentimes, gagging, rather than an opportunity to savor the flavors of delicious well-prepared meals.
Without trying, ALS patients become increasingly demanding. They know they must now rely on others to assist with the simplest of tasks that once were so commonplace that they never gave them a second thought. Tasks like wiping their noses, scratching an itch, reaching for a pen, turning the page of a book,or flipping over a menu in a restaurant. The list is endless.
Furthermore, the frustration level intensifies for both victims and caregivers. Neither can fully grasp the magnitude of the other’s plight.
Should we just surrender?
One response to this is a desire to take the easy way out and surrender. The better choice, as one ALS patient wrote, “is to savor the journey, not rue the destination.” “Cherish every circumstance,” added another ALS sufferer. Indeed, regardless of the barriers ALS throws in your face, the key is to relish each moment be it small or large.
Unquestionably, ALS evolves into an energy drain far beyond expectations. Those suffering from ALS must seek ways to conserve that energy.
You need to enjoy the things that mean the most to you each day. Take a few seconds to imagine yourself as that little pink rabbit pounding his drum. Then try to emulate the Energizer Bunny.
Indeed, the best plan of action is to know the enemy and do your best to stay one step ahead of him for as long as possible. Resign yourself to the fact that ultimately he will win. But never yield to this enemy until there is no other option.
“Quality of Life” is subjective. And elusive.
Addressing this strange balance addresses what medical professionals like to call “quality of life.” As conditions change, so too will the level of that “quality.” But it’s an individually subjective concept that all ALS patients must learn for themselves.
For me, my greatest joys come in writing and travel. I try to write something each day. I always hope it will be profound. But what I write isn’t as important as the fact that I do it.
As for travel, my lifelong dream has been to visit 100 or more countries. So far I am at 83 and 17 more seems like an impossible hurdle. On the other hand, the impossibility of the task is part of the fun of the challenge. Since being diagnosed with ALS, I have journeyed to 12 countries, eight of which added to my total of new destinations.
Though I may not get there, the joy lies in the planning and in the effort to seek ways to make it happen. If it does, so much the better. But if I fall short, no one can ever take away the life altering experiences I have enjoyed and the friends I have made throughout the world during my globetrotting. Nothing can ever take that away…not even ALS.
A creative approach to travel. And to hope
One good way to approach things is to attempt to combine them in creative ways. For example, as mentioned above, eating is becoming more of a task than a source of pleasure for me at the moment. So, as swallowing difficulties increase, I must begin seeking new ways to overcome the condition. Thus, in my own convoluted way I have come up with s triple play to satisfy my desire to travel, Emily Dickinson’s hope and my worsening dining dilemma.
What if I head to California for some bird watching? Yes, that would solve my travel goals as well as the “hope” requirement of Ms. Dickinson’s feathers.
But what about eating, you ask? As Sherlock Holmes would say, “Elementary, my dear Watson. Elementary.”
My destination would, of course, be Capistrano. After all, they say the “swallows” come back there every year. And I hope to see them soon.
—Headline image: Great Stone Church in the Mission San Juan Capistrano, California.
(Photo by Bernard Gagnon via Wikipedia entry on the mission, GNU documentation license 1.2)
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.
He is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
His goal is to visit 100 countries or more during his lifetime
Editors Note: Support Bob’s GoFundMe to give him a hand up