The Story of My Father (17 page)

Putting all this together as I worked on the memoir, what I had initially concluded was that his Alzheimer’s disease in a sense merely exacerbated a lifelong feeling of loss I had about my father.
My father was not his own.
Therefore he couldn’t be anyone else’s—and he wasn’t. He couldn’t be my mother’s, he couldn’t be mine or my siblings’—though I acted out, I was
bad
in an attempt to make him claim me. He
did
notice that. He tried to help. Always he was gentle, dispassionate, understanding, disinterested, wise. An abstract father. A father who might forget you if what he was thinking about at the moment was more compelling to him.

This, I had thought, must be what gave Alzheimer’s disease its peculiar emotional potency for me, even beyond the tremendous power it exerts in every family’s life where someone suffers from it. It took my father away, yes. But it reminded me that my father had long since been taken. He’d been gone, claimed elsewhere—by his beliefs, by his convictions, by the way they dovetailed with whom he’d become, growing up with the peculiarly Victorian and religious upbringing he’d had.

Another of the memories I’d recorded but didn’t know where to use in the memoir was of being, as a child, terrified by the passage in the gospel of Matthew in which Jesus speaks of a man’s most serious spiritual foes as being in his own household: his intimates.

He that loveth father or mother more than me is not worthy of me: and he that loveth son or daughter more than me is not worthy of me. And he that taketh not his cross, and followeth after me, is not worthy of me. He that findeth his life shall lose it: and he that loseth his life for my sake shall find it.

But I
was
that daughter, that daughter to be discarded, lost with the rest of the believer’s worldly life. This couldn’t be right. My parents had to love me more than they loved Jesus! Wasn’t that what parents were for? To love us best of all?

And now here in my middle age had come Alzheimer’s disease, terrifying me once more as my father left me behind once more. It seemed to me that this was my true struggle in writing my memoir—the revisiting of this childhood fear of abandonment, an abandonment you couldn’t argue with or even confront without sounding infantile, unworthy. The dragon for me was the course of the disease itself—not because it took my father from me but because it took him from me
again.
And what I was confronting and dealing with as I wrote was that terror, that selfish childish terror.

This was what I had come to as I structured the final version of my Alzheimer’s memoir, as I thought of it. As I pulled my material together for a last time.

But of course what I felt as I actually did the writing was not despair or terror or loss at all. Was very much their opposite. Was pleasure. I
liked
it. I liked doing the research, finding out about the disease. I liked remembering my father, searching for the words to call him up, even to call him up in his illness. It comforted me. It excited me. I remember after a public reading of a portion of the memoir—the chapter that explains the way certain abilities are destroyed in the Alzheimer’s patient’s brain—a friend said to me that there had been a lively interest audible in my voice as I read, that my fascination with the material was evident.

Instantly I recognized the truth in what she said, and I felt guilty. I felt
caught in the act
somehow. I started to make excuses for myself.

She realized she’d made me uncomfortable. No, no, she said. What she’d meant was that the ability to take that kind of pleasure in my work, in what I was writing, was surely a gift my father had given me.

And as soon as she said it, I felt it: it
was
pleasure, writing, and it
did
connect me to him. It brought him back to me, even as I used it to describe his disappearance.

My father had been deeply involved in my writing life, maybe in part because he wished my mother might have had the opportunities and rewards I was having. In any case, it was during the years I was struggling to write and then having my first small successes that he and I were closest—the very years, of course, in which he began to be symptomatic. He was the one I called when my first story was taken, when
The Atlantic
accepted another story, when there was an offer on
The Good
Mother,
my first published novel. His uncomplicated pride and his wonderful dry laugh of delight on the other end of the line were as gratifying to me as any other part of my pleasure in those events in my writing life.

And one of my markers of loss had occurred when I took an early copy of my second novel out to Sutton Hill to give to him. I had dedicated it to him, and I meant that to be part of my gift. But it was too late. I hadn’t finished it in time. He couldn’t take in the dedication, and he misunderstood what I gave him; he saw it not as a book—in spite of the fancy jacket with my photo on the back—but as an unfinished project I was asking for his help with, as a student or colleague might have. He thanked me for it and said he wasn’t sure when he would get around to going through it for me. And then he laughed and shook his head ruefully and said, “I just don’t seem to be able to get as much done as I used to.”

In the days and weeks following my father’s death, many people wrote to me and to my brothers and sister about him, letters that called him up whole from various stages of his life. Wonderful loving letters that didn’t begin to heal me until long afterward. I still have them. Selfishly, one of the most moving passages to me in all of them is this, from a dear friend of his:

And did you know of one of our last meetings, when his illness had already begun, and he came to our house holding in his hand, like a precious, even sacred object, a review of
The Good Mother,
which he showed us with a shy pride?

No, I hadn’t known that, though I’d taken pleasure in
his
pleasure in my success.

Even now, I often think of my father when I write. I think of the self-discipline I’ve inherited from him that drives me to my desk each day. Of the intellectual excitement I feel in doing the research I invariably have to do on a book. Of the sense I have as I work of being
in my element,
something he clearly felt too when he sat in his study day after day and looked up from his work at our lives passing by. It seems right, then, only natural, that I should have found even the writing of the details of his illness consoling.

Consoling, and also transformational. Because as I wrote, as I held up the bits and pieces I’d gathered to make the memoir from, I learned from them. I changed, and my understanding of things changed. I was revising once again.

I have spoken of my father’s absence, of the revelation of my sense of loss of him, as a child, then as an adult, which came to me while I worked on this memoir. But what I didn’t see until near the end of working on it was that he was present to me throughout its writing too. And partly as a result of that, certain incidents had gradually taken on a new meaning, a different meaning, as I wrote.

For instance, as I reworked the passage in the second chapter about the moment in which my father takes in the nature of what is going to happen to him and is, in a sense,
bemused
by it, I realized it contained a corrective to the sense of loss in the Charles Hartshorne story—the positive side to living with someone who
was not his own.
And in general, his acceptance of his illness—an illness that would take his intellect, his connection with other people, his ability to speak, to eat, to walk, to reason—seemed to speak of the inner resources he had because he was God’s, as he saw it. He thought of this illness without ego, precisely
without
the sense of self and grief for the loss of self that would afflict me if I found I had Alzheimer’s disease. In this way, the way in which I am very much “my own” for better or worse, my father was not. This was the source for him of an almost unfathomable strength as he began his slow decline. And this was part, too, of who he was.

The colleague who wrote about the Calvin quote hanging in my father’s office called him “self-effacing to a fault.” I have called him self-effacing too, even in these pages. But as I have thought about him, as I’ve worked my way through all the material I assembled, I’ve realized that I don’t think that’s so. Self-effacement implies an action taken, a willed result
—he
erased himself.

My sense of my father has come to be that he simply didn’t have that kind of
self
in the first place: the kind of post-Freudian, self-aware self most of us know all too well; the kind of self-conscious self most of us haul with us through life; the kind of self tortured by self-analysis that my mother had; the kind of well-developed, well-scrutinized set of feelings and sensibilities that, I confess, I take pride in in myself.

The drama that brought me to this memoir was my father’s illness and what it meant in my life. But there was another drama that occurred long after he died, that occurred as I was writing. The pieces I’d assembled, I discovered, made a different kind of story from the one I’d thought I was working on, and it wasn’t at all the story of a
self,
narrated by me. No, what I came to see by accumulating my material, by holding it up and looking at it again and again, by revising and revising and revising over the years, was that there was no such narrative to be made of my father’s life.

This is my final version, then, of the story. Most of the book is taken up with my father—it was what happened to him, after all, that caused me to grieve, and to struggle. And to learn. But
what
I learned was that in this way, as in so many other ways, my father didn’t need me to rescue him, to make sense of his life. He accepted what was happening to him, the way he was fracturing and breaking apart, as he had accepted it in possibility well before it happened. For him his life and death already made sense. For him, Psalm 103 could be read through without irony to its conclusion, which goes as follows:

But the mercy of the Lord is from everlasting to everlasting upon them that fear him, and his righteousness unto children’s children; to such as keep his covenant, and to those that remember his commandments to do them. . . . Bless the Lord, O my soul.

I don’t remember if I read this psalm to calm him when he was in one of his violent panics; I might have. And it might have been among the many psalms I read to comfort him while he was dying, but I don’t remember that either; I hope it was. I think it might have comforted him: just the familiar rhythms, the old words, and the deep faith they describe.

My comfort is different, but, like his, it has come from what is most central in my life. I’ve called him up over and over and in a variety of ways as I thought and wrote this memoir. And he’s come to me over and over, and more and more clearly. I’ve
revised
him, as I’ve revised my ideas about what I was doing, calling him up. For it is by writing, by the simultaneously pleasurable and painful processes of working my way through the material I collected and made over the years I labored on this memoir, that I’ve come to see that his consolation would always have lain beyond the reach of any story I could have made of his life. But it is by the making of the story, and by everything that changed in my understanding of him and of myself as I made it, that I have been, as the writer that I am, also consoled.

Acknowledgments

This is a book that I needed help to write, and I got it from a number of generous and skillful people. I’d like to thank them here. Judy Watkins dug up and annotated articles and films and books and whole magazines for me on Alzheimer’s disease and the latest—and earliest—thinking about it. Maxine Groffsky and Doug Bauer read multiple early drafts and were critical and kind and helpful and patient. My editor, Jordan Pavlin, made a number of suggestions about my final draft which made the book more exactly what I’d wanted it to be. Aleister Saunders kindly read through the passages that deal most directly with the science of the illness and made several suggestions for more precise language. I’m enormously grateful to all of them.

Several books were important to me as I tried to understand the brain and memory and the nature of my father’s illness. They are
The Engine of Reason, The Seat of the Soul: A Philosophical Journey into the Brain,
by Paul M. Churchland;
Search
ing for Memory: the Brain, the Mind, and the Past, by Daniel L. Schacter;
Descartes’ Error: Emotion, Reason, and the Human
Brain,
by Antonio R. Damasio;
Memory’s Ghost: The Strange
Tale of Mr. M and the Nature of Memory,
by Philip J. Hilts; and
The Forgetting: Alzheimer’s: Portrait of an Epidemic,
by David Shenk.

Most of all I’m grateful to Doug Bauer and Ben Miller, who buoyed me through life while my father was ill and dying.

The Story of My Father

SUE MILLER

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