struggling with structure

No luck on Thanksgiving not gorging myself. In fact, I ate excessively all weekend. And now I have a horrible cold. (Not that these two things are related. I only wanted to point out that I’ve been uncomfortable—in slightly different ways—for many days now. With Sudafed off limits I’d actually go so far to say I’m now miserable.)

But enough complaining. On to more important things:

I’ve been thinking a lot lately about how successful essays are structured. I’d like to cull a couple of essays from my manuscript, but it’s such a daunting task—cutting and rearranging in an attempt to boil down 300 pages into manageable essays. I know writers who do this regularly, but it seems to be a skill I lack. How does one do it? If I had begun with essays and turned them into a book would it be easier? Or would it simply be a different struggle?

Yesterday in class we talked about structure, and I had my students read two essays: “Moonrise” by Penny Wolfson, about which I’ve already posted, and “The Sound and the Worry” by Suzanne Kamata. One of the reasons I chose these two essays was because both have taken large events that covered years and condensed them into manageable essays. “The Sound and the Worry,” published in the Summer 2004 issue of Brain, Child, is about Kamata’s daughter’s deafness (due to being born 14 weeks premature) and Kamata’s desire for her to have sound and, ultimately, find happiness. Now I know some of Kamata’s story and have referenced other essays and stories she’s written about her twins’ birth at 26 weeks. I know it’s a huge story, so what impresses me so much about “The Sound and the Worry” is Kamata’s ability to focus in on one strand of the story—her daughter Lilia’s deafness—and follow that through without getting distracted by everything else that I know was going on at that time. So impressive.

Wolfson does a similar thing in “Moonrise,” an essay about trying to come to terms with the inevitable end of her son’s life due to Duchene, a form of muscular dystrophy. It’s an essay about her son growing up and deteriorating all at once, about the fragility of life and at the same time about finding the beauty in life, even when it is fragile and finite. She is able to contain sixteen years of her son’s life in mere pages, and it blows me away every time I read it. Wolfson also has a memoir by the same name, which of course I need (and want) to read. Maybe it would help me see how one pulls an essay from a book. (Of course I don’t know if she wrote the book first and then the essay or vice versa. Maybe it doesn’t matter.)

You can’t access either of these essays online, but if you go to Brain, Child’s archives, you can order the Summer 2004 issue for “The Sound and the Worry.” You can find “Moonrise” in Best American Essays of 2002. (I guess you can access "Moonrise" online here if you are an Atlantic Monthly subscriber.) I’m also going to order Wolfson’s memoir, because I obviously need some help.

Also know that Suzanne Kamata’s first novel, Losing Kei is forthcoming in January. I’ll post about it then.

moonrise

Penny Wolfson’s essay “Moonrise” (Best American Essays 2002) is the only motherhood essay that I could find when I searched through two decades of Best American Essays. (Someone, please, correct me if I’m wrong—I’d love to be wrong about this.)

Is this evidence that most memoirs and essays about motherhood are not taken seriously enough to be considered noteworthy? I imagine it does, and I will come back to this another day. Today, I want to focus on what makes “Moonrise” such a triumph of an essay.

It’s about Wolfson’s struggle to come to terms with the fact that her son, Ansel, is deteriorating and will die from Duchenne, a form of muscular dystrophy. The essay begins at the Center for Creative Photography in Tucson, Arizona. Wolfson and her husband are looking at Ansel Adams prints of Moonrise, Hernandez, and she says: “The prints differ greatly in quality from the reproductions one usually sees…but that does not change the essential meaning of the photograph, a meaning one never forgets in the Southwest: Nature dominates. Human life is small, fragile, and finite. And yet, still, beautiful.” This is the crux of the essay for me—the fragility of life, the struggle to focus on the beauty in it rather than on the tragedy.

The rest of the essay is divided into titled, dated sections: Falling, 1998; Chaos, 1999; Moonrise, 2000. Each section is written in the present tense, which creates a sense of time, the moments and events of Ansel’s life, being stacked on top of each other. I think this is a particularly brilliant move—and I don’t use “brilliant” casually. Time creates tension in the piece: Ansel is doing better than most adolescents with Duchenne, yet he is still deteriorating quickly, and he will die young. At one point, when Wolfson and her husband take Ansel to his yearly visit with the neurologist, Wolfson says: “I am very conscious that on our last visit Ansel walked from the waiting room to the office, and I remember the look of surprise on the doctor’s face: how amazing that a fourteen-year-old with Duchenne could still walk! Now Ansel wheels his way down the long corridor, and I am the one surprised that he could have walked so far so recently.”

The essay would have had such a different feel—and not been nearly as successful—if it had been written in past tense. And of course Wolfson knew this, which is why (I imagine) she chose the present. In the essay, after her husband asks her what she is writing, she even says, “it is about Ansel’s growing up and deteriorating all at once, the ‘unnaturalness’ of a child’s beginning to die just when he is beginning to flower.” Bingo. I wonder, too, if using the present helps readers understand how impossible it is for Wolfson (or any parent) to imagine life without her child.

Her prose is flawless, her metaphors carefully measured, and throughout, the sadness and not-knowing are palpable.

She has written a book-length memoir based on this essay. I haven’t read it yet (it’s on my ever-growing list), but I’m sure it’s as beautiful and well-crafted as the essay. It’s called Moonrise: One Family, Genetic Identity, and Muscular Dystrophy. Have any of you read it?

So thank you, Penny Wolfson, for this wonderful essay, and thank you Stephen Jay Gould (editor of the 2002 Best American Essays) for recognizing the essay’s worth.

prematurity, disability, and Past Due

I have been thinking about this for a couple of weeks. On February 20th, there was a story on NPR about the gestationally youngest (known) preemie to survive--ever, anywhere. Her name is Amillia and she was born at 21 weeks and 6 days gestation (a little more than half the gestation of a normal pregnancy). She was 9 1/2 inches long (think ball point pen) and weighed 10 ounces.

Amillia is not the smallest preemie to survive. Two years ago, Rumaisa Rahman was born at 25 weeks and 6 days gestation weighing 8.6 ounces (think lighter than a can of pop). The thing that angered me when Rumaisa's story was all over the media was that people kept saying that she was "perfectly normal," and that they expected her to develop "normally."

The focus of stories about extreme prematurity is often on how the babies were "saved," how they're "miracles." But little attention is given to the long-term effects of severe prematurity. The truth is that it remains the #1 cause of disability among newborns.

The thing that I appreciated most when I listened to Amillia's story was the cautionary note in Dr. Paul Fassbach's voice. He said that Amillia's case was specific, and that though she seemed to be doing well, there were still issues that might arise with her brain development. He said the American Academy of Pediatrics did not recommend intervention in the case of babies as early as Amillia, and he "worries that parents of other extremely premature babies will hear Amillia's story and expect the same outcome."

Now, it's hard, nay impossible, for me to say what I would do if I were in Amillia's mother's situation. Amillia was teetering on the edge of viability. Would I say, no, don't do anything to try to save her? Or would I go all out? I don't know. Can anyone know, for sure, what they would do in this situation? The thing is, I know what can go wrong. I am intimately acquainted with the neonatal intensive care unit (NICU). I know a 23-weeker who had a grade 4 brain hemorrhage, encephalitis, and CP, and who will never speak or walk. But I know 23-weekers who are, except for a slight limp or glasses or math processing problems, fine.

But you can never know. And the question that I keep coming back to (and which makes me very uncomfortable) is this: just because we can save 21 and 22-weekers, should we? How far should we push this? That early, most babies will die, or have severe disabilities. But then there are babies like Amillia.

There is a wonderful memoir called Past Due: A Story of Disability, Pregnancy and Birth by Anne Finger, which explores the complexities of disability and reproductive rights. Finger, who won the AWP Award for Short Fiction in 1987 (for her collection Basic Skills), was one of the last people in the U.S. to get polio. In Past Due, the story of Finger's pregnancy and birth of her son are couched in a larger discussion of disability and reproductive rights.

The book is often gritty. Finger never shies away from the hard questions (as I am probably doing here, by turning to her). She writes about a meeting of the Committee to Defend Reproductive Rights where she was asked to speak about disability and reproductive rights. The discussion was tense, and at the end of the meeting, Finger says, "What it all boiled down to was, did I really think that disabled people were as good as everyone else? Was I really saying that a disabled life was worth living? I was too stunned to respond to them very well. What seemed obvious to me--that a disabled life was worth living; that our lives weren't endless misery--seemed dubious at best to them."

When there are complications with her son's birth and he ends up in the NICU, all of these issues come up again.

Finger has written a several other books; the most recent is Elegy for a Disease: A Personal and Cultural History of Polio. I have not read it, but I will. She's not afraid of asking the hard questions, and I need her help.