ALS · family · holidays · Lou Gehrig's Disease · modern life

Winter Of the Ghost

I opened the bathroom door and stepped out, exhaling loudly.  “Bye Dad,” I said and waved again, heading towards the front door.  We had already said our goodbyes before I had to go to the bathroom again; unsure if it was something I ate or the new stomach bug that had been making rounds at work and daycare I had veered on the side of caution and used their facilities before our half hour journey home had begun.  

My father, a living ghost of the man he had been less than two years ago, turned to his left towards me in a mechanical movement and partially raised his right arm at a ninety degree angle as high as he could.  “Bye bye,” he responded and turned back towards the television set.  His movements reminded me of the Tin Man.  


That was the best he could do. 

Outside, RB and my mother were talking in the driveway.  My mother stood next to the open Jeep door with RB a couple feet away on the grass, cigarette smoke rising from his curled right hand.  As I came closer I could hear the conversation was about my father’s condition.  


I was welcomed into it right away by my mother: “So your idiot uncle (one of her brothers) called the other day and said, ‘I saw a picture of Casey and he really doesn’t look good.’”  I didn’t ask what picture.


BB was chattering happily to himself inside the car, loudly exuding pleasure at the fact he was able to twist and scrape off his right sneaker against the backseat he was still facing, despite his ever growing stature.  It had fallen lifelessly onto the seat next to him.


“I told him, ‘No shit, he’s dying.’”  

She added a shrug for emphasis and I looked down at my black sneakers.  There was a light coat of white powder around the toes, a remnant of the Easter Bunny’s ‘trail’ (baking soda) that I had very carefully spread around the first floor of the house at two thirty that morning in eager anticipation of BB waking up.  It seemed so long ago.  

“He said, ‘I don’t think it’s ALS,’” she continued.  “Well, after two years of doctor’s appointments and different tests and everything I’m not sure what else he thinks it could be.  They showed me that test that he got at the neurologists.  I saw it and there was nothing there.  He has no feeling at all, even in his tongue.  What else could it be?”    


The wind began to pick up again, negating the warmth that the delicious sunshine had sprinkled over us.  I shivered and rubbed my arms, glancing over at my coat in the backseat.  BB continued to talk to himself, and I noticed him again just as he successfully tugged off his right sock.  His ethereal face, still cherub shaped, blossomed full of joy.  


“He said he didn’t mean to be mean or offensive by saying that,” my mother continued.  Rick managed to flicked his cigarette butt into the street, against the wind, and it danced away.  We were supposed to get rain but it had managed to hold off all day; dark clouds were beginning to gather above us. “But I told him, ‘It is what it is.’”  She added another shrug of her wide, broad shoulders.      


It seemed like we had been deprived of the sun for so long, when in reality it was really just a few short months of darkness, in the scheme of things.  It was just another winter.  


It was what it was.    

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