CHARLOTTE, NC: Sometimes with ALS it is difficult to maintain a positive attitude. It’s easy to have a “pity party” for yourself during those rare times when you are alone.
Rachel Doboga, an ALS patient with advanced conditions, writes in I’m Stepping Out of the Past to Fully Appreciate the Present:
“It’s hard to live in the present when the past feels as close as my shadow.”
I like the “shadow” reference because it is a reminder of what once was and how fleeting life can be.
Any ALS sufferer, no matter what stage of their plight, can relate at one level or another.
ALS and the loss of tactile sensation
In her article, Ms. Doboga laments that it is the physical tactile sensations of living she misses most; touching the ground, washing her hair, hugging her husband, etc. Often there are other losses a person would not consider as possible challenges such as turning the page of a book or scratching an itch. Believe me, there are more than you can imagine.
In her advanced phase of ALS, Rachel Doboga has also lost voice which means her ability to spontaneously respond to a moment is long past by the time she can make herself heard. That’s particularly troublesome when it comes to using her sense of humor as a means of maintaining a positive approach to her situation.
Fortunately, Rachel can still laugh, and, for now, that’s a blessing.
The ALS loss list
In her story, Rachel recalls stopping in downtown traffic and observing the pageant of life passing before her on the streets of the city. Her first reaction was jealousy as she watched people go about their daily routines with “ease and grace.” One of the first things she thought of was how she would never be able to hold her godson again in a way that provided loving comfort for both of them.
I can relate in a small way to that feeling because one afternoon I went in to pick up my two-year old granddaughter after she had awakened from her nap. Forgetting that I could no longer respond normally, I picked her up and immediately fell backward crashing into and destroying the clothes hamper while scaring the child to death in the process.
It would be nearly six months before she would come near me again.
As Rachel peered from the windows from the silent safety of her cocoon, she comments that
“It was like watching a ballet. I couldn’t believe I had ever moved (so effortlessly).
The memory was both distant and visceral.”
Indeed, time does have a way of quickly erasing aspects of your life that are frequently taken for granted. Yet, when everything functions normally why would most people even think of dealing with disabilities until they, themselves, are affected? It’s not a matter of being ungrateful so much as it is having no personal frame of reference.
At first, I reacted to the Doboga story as more negative than positive. Though I understand her perspective with the feeling of loss, the jealousy and the reflections on her past, my immediate considerations went in the direction of “those are the cards we were dealt” so now we must play them in order to maximize our remaining strengths.
Accepting the unacceptable
In the end, however, Rachel Doboga reached an epiphany of acceptance where she realized that remembering the goodness of the past and dwelling upon it was a waste of even more precious time in the present.
Though she still feels jealous at times, Rachel has moved beyond mourning for being unable to respond quickly to a joke or to hugging those she loves. After all, the good news is that they can still hug her.
As Rachel looks at her world now, she realizes that as ALS progresses, there is always more to lose, so why not savor the things that remain while she can?
“Gratitude,” says Doboga, “has helped me to step out of the shadows of
my past to fully appreciate and experience the present.”
For myself, I am constantly inventing new ways to overcome my handicaps. In that sense one thing I have created is the “ALS Hug”, which in this day and time is a great way to get away with “groping” without fear of reprisal.
When I want to hug someone, here’s the solution. Ask the person to take your right hand and put it on their shoulder. Then tell them to do the same with your left hand. Now pull them closer and voila! An ALS hug. Maybe it’s not as good as the traditional way, but it sure breaks the ice and makes everyone feel more comfortable.
“Necessity is the mother of invention” so they say.
To all my ALS friends, milk the situation for all it’s worth. Recognize your limitations and let others assist. You’ll be amazed at how many folks are willing to help and, in the end, if you can save your energy for the things that matter to you most, you will be ahead of the game.
ALS hugs to each of you.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is anaward-winningg television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.Taylor is the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up
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