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Living with ALS and the joy of old fashioned Christmas Carolers visiting

Written By | Dec 22, 2019
Christmas Carolers, ALS, Living with ALS

CHARLOTTE, NC; While sitting in the den watching television last Friday night, my wife and I were unaware of a small gathering of people, Christmas Carolers, who were assembling outside our front door. A friend of ours from church had told Jane that they might stop by for a few minutes for a brief Christmas visit, so we were expecting another couple to arrive at any moment, but we were not prepared for much beyond the usual fellowship of the season.

One benefit of ALS is that with my limited mobility, more often than not, people will pop in now and then to just say “hello.” The plus side is that we don’t have to go out ourselves. Friends, neighbors, and company usually come to us.

Naturally, there are times when Christmas can become a season of “drop by for a visit” on steroids.

In fact, there are moments when we sense that the only two parades in the country that are larger than the one in our house are the Tournament of Roses on New Year’s Day or Macy’s Thanksgiving Day in New York City.

This particular Friday had been especially long and tiring because it was an ALS clinic day which takes place every three months. On clinic days, patients go to the local neurological center on a regular basis to meet and consult with each of the 11 to 13 specialists in charge of their care in a single session.




In so doing they don’t have to schedule separate appointments, thereby preventing them from constantly going to the doctor.

It’s a huge time saver, but the actual clinic day itself is long, tedious and tiring. Needless to say, much as spending time with friends is usually something to look forward to and treasure, last Friday was not one of those times.

Christmas Carolers bring an unexpected visit of joy and celebration

The “Charles Dickens Ensemble stopped by last week for some old time caroling (Photo: peabod)

Imagine our surprise then when the doorbell rang and Jane opened the door to discover ten people outside rather than two. Each person was decked out in period clothing from the Charles Dickens era and the moment the door opened the tiny ensemble burst into song.

“O come all ye faithful, joyful and triumphant,
O come ye, O come ye to Bethlehem
Come and behold Him
Born the King of Angels,
O come let us adore Him,
O come let us adore Him,
Christ the Lord”

There at our front door, on a cold, dark wintry December night, stood a small group of Christmas revelers all decked out in their finest period-appropriate outfits to lift their unified voices in song in the true spirit of Christmases so long ago.

Hearing the Christmas Carolers from my little corner in the den, I quickly revved up my super deluxe motorized Permobil wheelchair, racing to the front door. Despite the chilly atmosphere, the top hats, bonnets and wool scarves enveloped the scene with the warmth of a Norman Rockwell painting or a nostalgic Christmas card scene.

Only last week I had written about the void I felt in my heart in 2003 when Christmas itself practically disappeared from my life while living in Saudi Arabia. The holiday was devoid of the sounds of Christmas.

Living with ALS: This holiday, you don’t know what you’ve got ’till it’s gone

One of the “blessings”, if you can label a debilitating condition of your nervous system a blessing, is that, for most ALS victims, the relatively slow progression of its deterioration usually allows them ample time for reflection and introspection.

Spontaneous as the carolers singing outside our door seems, there is considerable planning necessary to make it happen. First, someone comes up with the idea, then volunteer singers are recruited, date and time coordinated, costumes and other considerations had to occur in order to bring it all together.

Thus, “spontaneous” as it may have seemed, the music outside was anything but serendipitous. This was a thought out, well-organized occasion designed out of friendship, love, and compassion.

As I listened to the Christmas music outside, I wondered to myself what it was that had made us the beneficiaries of such inspiration and caring. Jane has been singing in the church choir for most of her life, but there were 50 or 60 other singers at home at that same moment who could have just as easily been the recipients of this marvelous outpouring of kindness.




After their second carol, the mini-choir came into the house for chit-chat, more singing, cookies and lots of laughter and well-wishes. For the next half-hour or so our den was full of the fellowship and joy of the season all enhanced by the marvelous carols we have known throughout our lives.

The Charles Dickens Ensemble of our church choir had raised the spirit of Christmas to a new level of sharing and caring.

Sharing the light – sharing the love of Christmas

I continue to be overwhelmed by the effort, and though I still cannot grasp why we were so fortunate, whatever the reasons, I have learned each day that the strength of those reasons lies far deeper than it is possible to imagine.

So with football playoffs on the horizon, I personally turn to yet another tradition to offer the world’s very first literary Instant Replay from a different angle:

The doorbell rang.

Jane jumped up and asked me,

“Do You Hear What I Hear?”
“No,” I replied, “I dozed off  ‘Away in a Manger.'”
“Well then ‘God Rest Ye Merry Gentleman’ I’m answering the bell.”

Jane opened the front door and there in the once “Silent Night” stood a small group of carolers who brought “Joy to the World” in song. “Hark, the Herald Angels Sang” for “Cometh All Ye Faithful” to harmonize into the darkness of the night.

In baseball terms, they “Handeled” their assignment with a perfect pitch as they echoed the praises of the “Messiah.”

Random acts of kindness are, indeed, what Christmas is all about.

And so in the immortal words of Charles Dickens through the voice of his character Tiny Tim, we shout, “God bless us, every one!”

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No brighter light exists than the one of a child singing praises to the Lord:  Merry Christmas Bob, and family, and to all our readers from Communities Digital News.

Bring joy and light through song into your home with The Five Strings YouTube Channel or visit their website

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.