But that night, in particular, a strange (and ever since inexplicable) thing occurred to me.  Starting from a brief standing sleep, I was horribly conscious of something fatally wrong. . .I thought my eyes were open; I was half conscious of putting my fingers to the lids and mechanically stretching them still further apart. But, spite of all this, I could see no compass before me to steer by;

Chapter 96, The Try-Works

There is a point in childhood ,or at least in (what I assume is) a healthy childhood –the sort where the child and the parent occupy two distinct and separate roles, when the demi-god parent figure stumbles just enough to fall to earth in his child’s eyes.

I recall the moment my father fell to earth. I remember where I was standing (at the end of a hallway in a house outside Oakland, California).  I remember the time (evening, just after bedtime). I remember he was sitting, as he always did, at night, in the gold arm chair in which he had taught me to read.

My father was brilliant.  (Does every girl think this about her father?) A doctor–who left each morning in his crisp white Navy uniform.  He would scoop me up each morning to hug me good bye, letting me crown his distinctive red head of hair with his officer’s cap.  Not only was he invincible, but, in his arms, I was too.

He could name any piece of classical music within two bars.  Composer, time period, movement.  He taught me to read and to tell time and to say “I beg your pardon” instead of “what?”.  He told us water was H2O and when things happened at the same time, they were occurring “simultaneously”.  He never talked down to us, ever.  He could draw, and remove splinters, and fix things.  He could fix anything.  I had lived my entire existence absolutely sure of this fact.  My father could fix anything.

But on that night, he told me he could not.

I was four and,being a superstitious creature -the sort of child tortured by the idea that a simple mis-step onto a crack could actually physically snap my mother’s back clear through–I followed my routines with a religious zeal.  To fall asleep each night I would turn the small gold key implanted in Winnie-the-Pooh’s back and on its release a serenade of  Pooh’s eponymous theme song would spring. On this particular night, as my small fingers gave the key one last turn, it did not lunge to its usual release, but sat frozen.



I slipped  from my bed and padded down the hall pausing at the end as if waiting to be announced.  From where I stood I saw only the back of my father’s head buried,as usual, in his New England Journal of Medicine.

“Pooh stopped.” I told him as I stood at the end of the hall, awaiting an invitation.

He did not look up.

I’m sure I repeated my announcement before he snapped:

“What do you expect me to do?”


This was not the man I knew–the invincible healer.  Where was the comforting smile, the arms opening to invite me onto his lap?

“I need you to fix him.” I patiently explained, to which he replied:

“. . .I can’t.”

(I begin to reel–

first stage:denial)

and then he capped it off without ever looking up “Go back to bed.”
Back to bed?

Without this resolved?

With my routine interrupted?

God knows what fatal shift in the heavens this could bode? I began to cry.

“Goddamn it!




Memories at the age of four can be sparse, and it must have been a good ten years later that I realized what was happening that night.

My grandfather, my father’s father, had lost his battle with ALS.

Amyotrophic lateral sclerosis.

My grandfather’s passion had been building–building intricate machines and models from the thousands of pieces he carved and collected in his workshop whose walls were lined with shelf after shelf of  meticulously organized baby food jars containing the sorted screws and tacks and bolts he used, before his hands began to fail him.  He lost the use of his hands, he lost his ability to speak, and, finally, he lost his struggle to breathe.  His lungs were paralyzed.  The final stage of ALS.

When people ask me if I think it would be worse to lose your mind first or your body, I know my answer.

Take my mind.

My grandfather suffocated, paralyzed– unable to express a single thought from his trapped mind.

And my father, the doctor, could not do a thing.  And while he stood at the side of my grandfather’s grave, watching the body lower into the ground, my mother was in a shed on the Navy grounds three thousand miles away, pushing my brother, their only son, into this world.

My father’s son was delivered by his colleagues while the dirt fell on his father’s grave.

What was the real weight of his words that night when he did not look up.

Did not open his arms to me.

Goddamn it.