5-30-11: The Time Leading Up To It

May 30, 2011 at 7:55 am Leave a comment

Dudley Clendinen is an award-winning author and journalist who lives here in Baltimore.  A former reporter and editorial writer for The New York Times, he found out in November, at age 66, that he has Amyotrophic lateral sclerosis, or ALS, more popularly known as Lou Gehrig’s disease.

There is no known cure for ALS, and once a person is diagnosed, they usually live between 1.5 to 3 years.

Over the past few months, Dudley has been speaking with Tom Hall about living with ALS.  In this conversation, he talks about how his emotional state has been changing over the past few months.  “I think my feeling is changing, the depth of it.  Also, I think I’m becoming more aware of it.  It’s funny:  I’m calmly cheerful on the exterior.  I have a calm, pretty cheerful epidermis.  But my dermis is a big, wet puddle.”

Dudley says that his emotions almost seem to have a life of their own. “It sort of exists apart from my own thoughts about it.  I really don’t think I’m afraid of dying.  I think I’m afraid or horrified by the idea of a compromised life, but death doesn’t scare me, so I’m not sure what the sadness is about, exactly–but I guess it’s pretty obvious that [ALS] must have something to do with this.”

Dudley says that his death will be harder for others than it is for him.  “The event for me is the time leading up to it… The event is the life you lead knowing you are going to die, and the engagement with others.  Selfishly, those moments mean a great deal to me, but the shaping of them is really for the people around me, because I believe totally this is much harder for them than for me.  I’ve accepted it.  But persuading others that it’s not unfair for some reason, or wrong, or a great tragedy — it’s not any of those things.  It’s just the way it’s going to end for me.”

Dudley says that this is just a different version of the bus that could have come along and hit him because he didn’t look.  “I’ve almost managed to kill myself in various ways through the years, starting from the point when I was a dumb adolescent who hollered around, had a great time, and drank way too much.   Those things didn’t happen.  This one will.”

“I continue to think there’s a real advantage to this:  I know.  Most people don’t know.  So I can enjoy this time.  I don’t have to run down the road looking for false cures–there aren’t any.  And people say the nicest things, because I’m around to hear them.  All my friends are alive, and well, and we have a wonderful time.  There’s nothing wrong with that.  I could live another twenty years, and fifteen of those could be frail.  What the hell is the advantage of that?”

You can listen to all of our conversations with Dudley Clendinen here.

Entry filed under: Health, On Air. Tags: , , , .

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