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Living with ALS: Reflections of 2019 as the New Year quickly approaches

Written By | Dec 30, 2019
ALS, Christmas, Family

Christmas from Santa, a tiny Lego wheelchair (Photo: peabod)

CHARLOTTE, NC:  Last week, two days before Christmas, I asked my four-year-old granddaughter what she thought Santa Claus would bring me. Without a moment’s hesitation, she looked at me and said, “I think he’ll bring you a little wheelchair!”

I laughed out loud and later told everyone I encountered the story.

Our Christmas morning lull was interrupted about 10:30 when nine wild package openers showed up to tear into the Christmas wrap and Scotch tape that had been so placidly and colorfully arranged under the tree for a couple of weeks.

Eventually, it came time for me to unwrap a gift. There amid the bedlam of flying paper, Barbies and superheroes and odd-shaped jagged pieces of discarded cardboard and plastic was a little white box and, with it, a Christmas card.




My son opened the card and began reading:

“Dear Peabod,   You have been very good this year, so I have a little surprise! I love bringing gifts to people, but it makes me calm and happy when children make wishes for other people. That shows that they really understand the meaning of Christmas – that our gifts remind other people of how much we love them, and that love is the most important thing in all the world. May love and peace abide with you now and always.                                                                                                            Love, Santa Claus

After that, it was time to open the little white box that came with the card. I lifted the top off the box, and there inside was a small Lego figure sitting in a wheelchair! My granddaughter had nailed it.

Some unidentified Santa had heard the story and actually taken the time to battle the mall madness in search of my miniature treasure. Then they got a card and a tiny box and somehow managed to get the package under the tree without anyone knowing.

Santa does indeed work in mysterious and loving ways.

Living with ALS can turn your world into a place where wheels replace legs (Photo: peabod)

 

Years ago I discovered a poet name Merrit Malloy.

Much of her poetry dealt with her personal relationships, but she was also very philosophical about life. What appealed to me most about her writing however, was the clever way she would arrange words to give them greater impact, meaning and depth.

For example, one of my favorite poems also became the title of one her first books; My Song for Him Who Never Sang for Me

So on this, the last Sunday of 2019, here are some excerpts from one of Merrit Malloy’s poems The People That Didn’t Say Goodbye.  This work seems to appropriately sum up my thanks to everyone who has so lovingly assisted me in enduring my ongoing struggle with ALS throughout the year, including my anonymous “Santa” who found a miniature wheelchair somewhere amid the last-minute frenzy of the holidays.

The People That Didn’t Say Goodbye
There are the people who can hear the music in songs
They are the Vow carriers
The grandmothers who always leave the porchlight on
No one is lost to the one who sees
As distance is measured/people do not end
It is one of those stories that cannot be written down except across a lifetime of open               doors
There is a holding on beyond the letting go
There is a reunion in everybody’s chest
This is how we come to make a family from strangers
This is how we light candles
These are people who will remember you when you meet them
These are the people you can always call at night
They are humans turned angels by your asking
With each separation, they go to seed again.
There is something that does not wear out
It is the third part of any two people who join
It opens and closes
There are people you can count on/They are the keepers of promises
They are candles lit from each other
They can teach us eternity
We can get what we can give/This is the instruction
There are people who do not say goodbye
As distance is measured
You are one of them
― Merrit Malloy
(The People Who Didn’t Say Goodbye)

While Merrit Malloy’s words eloquently speak to me, it would not be proper to end the year without sharing a few words of my own as a personal thank you for all your caring, selfless support and love:

Kiss the day goodbye … softly
May each sunrise awaken you with lifted spirits
May you wrap your arms around each moment and hold it dear
May you embrace each hour with joy and never let it go
So that when the weary sun glows faintly with a promise of tomorrow
You may kiss the day goodbye…
                                                         Softly

— Bob Taylor
(Kiss the Day Goodbye…Softly)




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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 the founder of The Magellan Travel Club (www.MagellanTravelClub.com)

Read more of What in the World and Bob Taylor at Communities Digital News

Read more of Bob’s journeys with ALS and his travels around the world

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Bob Taylor

Bob Taylor

Bob Taylor has been travel writer for more than three decades. Following a career as an award winning sports producer/anchor, Taylor’s media production business produced marketing presentations for Switzerland Tourism, Rail Europe, the Finnish Tourist Board, Japan Railways Group, the Swedish Travel & Tourism Council and the Swiss Travel System among others. He is founder of The Magellan Travel Club (www.MagellanTravelClub.com) and his goal is to visit 100 countries or more during his lifetime.