fiddlerI watched an old movie last week, Fiddler on the Roof. We all ask what is the fiddler doing up there?  Tevye, the main character says, “Every one of us is a fiddler on the roof, trying to scratch out a pleasant, simple tune without breaking his neck.  It isn’t easy…”  Somehow, the fiddler on the roof finds a balance.

I watch as my patient with a rapidly debilitating neurological disease is losing his ability to be upright.  Yet, he propels himself forward, leaning his torso first back at a crazy angle, then to the front to gain momentum.  I have to grip my arms to my sides not to reach out and grab him, fearful he is going to fall.  He doesn’t want me to help.  And yes, some time he likely will fall.  But not today. 

He has things he wants to get done.  He tells me, in the voice that is now becoming breathless and nearly unable to form words, that when he can’t move anymore, he doesn’t want to be here.  But there are so many things that he wanted to do, and now he knows that there isn’t time.

He wrote a note for me, and as I read it I realized how hard he’s working to keep his balance.  Wistfulness and grief were in the words written simply, “I thought I would have the next twenty years to do this, I didn’t think I would be dying now.  I’m very sad.”  

The other things he has written were about symptoms that if I added this medication, or changed the dose on another, the symptoms would at least improve; not go away, but be better managed.  I make some suggestions. 

Then I tell him, “About this other part, the dying.  There isn’t a pill to fix this.”  He smiles and shrugs his shoulders and whispers, “I know”. 

He still laughs, and makes a joke about the bowel thing that we always have to talk about.  I think of the fiddler on the roof, and I hear the sweet, melancholy music that he plays
as he strikes a simple tune, and keeps his balance. 

“It isn’t easy…”  The word Brave comes to mind, beyond what
most of us can imagine.

About Amy Getter

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