Living with ALS and dealing with the unexpected

CHARLOTTE, NC: For a brief period during the middle of the last century the most popular way to listen to music was on 45-rpm records which were readily available in jukeboxes across the country. Today, anyone born after the turn of the century most likely has no idea what a jukebox is, or was, any more than they could identify a typewriter, a fax machine or a dial telephone. In 1956, Bob Hilliard wrote a novelty song called The Railroad Comes Through the Middle of the House that did well on the pop music charts, and which really amused my mother. It was a song about unexpected surprises. I feel certain if she were alive today she would have recalled that clever little ditty and had a huge belly laugh at our most recent ALS adventure. To begin, by way of background, here are the lyrics to Bob Hilliard's 1956 creation: > ##### "The railroad comes through the middle of the house The railroad comes through the middle of the house The trains all come through the middle of the house Since the company bought the land

They let us live in the front of the house They let us live in the back But there ain't no livin' in the middle of the house 'Cause that's the railroad track
When a bill collector comes to the house He knocks and bangs on the door So we sat him right down in the middle of the house And he never comes back no more
The railroad comes through the middle of the house The railroad comes through the middle of the house It comes and goes through the middle of the house And the trains are all on time
The railroad comes through the middle of the house In and out of the middle of the house Right smack dab through the middle of the house Where the parlor used to be
There's a great big door in the front of the house There's a little old door in the back But we can't have doors in the middle of the house 'Cause that's the railroad track
A relative came to visit the house He liked to scream and fuss So we sat him right down in the middle of the house And he never more bothered us
The railroad comes through the middle of the house The railroad comes through the middle of the house It comes and goes through the middle of the house And the trains are all on time And here comes the five-oh-nine
I'm singin' this song in the middle of the house (train whistle)"
Unexpected Surprises of daily life

As Paul Harvey used to say, "A now here's the rest of the story." About two years ago, after returning home from a long weekend visit with high school classmates in Chapel Hill, NC, my wife noticed our kitchen floor was wet and buckling and that our stove was leaning forward. The angle wasn't severe, but the stove was clearly no longer level. Naturally, our first call was to our homeowner's insurance to notify them and to get the problem repaired before we and the oven fell through the floor. After assurances that everything would be resolved, an adjuster came out to assess the damage. Shortly thereafter he zapped us with yeat another Unexpected Surprises. ##### "You have hidden water damage," he said.

"No kidding," I thought, We didn't need Sherlock Holmes to tell us that!"
"The problem is the damage has been going on for quite some time, so there's nothing we can do."
I was beginning to get angry.
"We reported this at the first sight of the problem, but what you're saying is that we should have caught it sooner, even though we were unaware of it."
"Yes," answered the adjuster. "If you lived in Georgia or South Carolina or Virginia, then no problem."
"But WE don't live one of those states, do we? WE live in North Carolina, so guess what? You got it, major problem."

Not having $16,000 at the ready, we opted to repair the leaky pipes and to gamble with the rest. Our daily diet now consisted of things like slanting souffles and pineapple upside-down cake. ##### Purple Heart Homes

Several months later, one of my caregivers suggested we contact Purple Heart Homes (PHH), a non-profit charitable organization that provides assistance to disabled veterans when their insurance companies fall short. Sure enough, in the long run, PHH did come through, however, it has, indeed, been a looooong ruuuuun. More than nine months after our initial contact did the work finally began. Just after new years, the "three-day" work assignment commenced. Now as March approaches, our refrigerator still sits in the den, all the contents of the pantry have taken up residence in the dining room, the washer and dryer are on the front porch and we are considering putting the van on cinder blocks in the front yard to complete our "early Appalachia" decor. (<span class="articlesubheadline" data-test-id="Article Subheadline">Appalachia -<span class="articleheadline" data-test-id="Article Headline">The Fifty Years War) ~~~

Image by Eyevine

~~~ Then a funny thing happened last week just as we were on the verge of entering a long-awaited and eagerly anticipated period of relative normalcy. I say "funny" but not "ha-ha funny" so much as it was "strange funny." Unbeknownst to me, while I was inside working on my computer, my wife was outside, as she usually was in the morning, getting our van ready so we could go to breakfast. Suddenly there was a loud crash. Being unable to turn my head to the right, I peered out of the corner of my eye as far as I could but saw nothing of consequence. ##### To my way of thinking a large picture had fallen off the wall. Oh, how wrong I was.

That's when Jane came into the house practically in tears. How she held back I'll never know. In the process of getting the van ready, it had slipped out of gear while Jane was on the outside on the passenger's side of the vehicle. With nothing to stop it, the van rolled forward onto the porch, snapping a support pole like a twig and slamming into the house. It was now time for a brand new set of repairs; a new bumper for the van along with a new hood, a new support pole the for the front porch, a new dining room window which is two inches out of alignment, repairs to cracks in the plaster in the walls and ceiling and new molding for the entrance from the dining room to the sitting room which is now two inches out of plumb, not to mention numerous other minor cosmetic repairs. > ##### For all intents "The railroad was now coming through the middle of our house."

In honor of the occasion, we now offer the words to another 1966 novelty song and, yes, another of my mother's favorites called They're Coming to take Me Away:" > ##### And they're coming to take me away ha-haaa They're coming to take me away ho ho hee hee ha haaa To the funny farm Where life is beautiful all the time And I'll be happy to see those nice young men In their clean white coats

And they're coming to take me away ha haaa They're coming to take me away ha haaa They're coming to take me away ho ho hee hee ha haaa To the happy home with trees and flowers and chirping birds And basket weavers who sit and smile and twiddle their thumbs and toes And they're coming to take me away ha haaa"

##### The old saying goes that "God never gives you more than you can handle."

That may or may not be true, and we'll handle this one too because we must. But listen Big Guy, or Gal, after this we'd like to put in for a break. Whattya' say. Deal? ##### **************

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 Editors Note: Support Bob's GoFundMe to give him a hand up Follow Bob on Twitter - Facebook Lead Image: By Claude Monet - Arrival of the Normandy Train, Gare Saint-Lazare, by Claude Monet, 1877, Art Institute of Chicago Public Domain, https://commons.wikimedia.org/w/index.php?curid=21909091

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