Our Research Notes series invites authors to describe their process for a recent book, with “research” defined as broadly as they like. This week, Stephen Policoff writes about Come Away from Dzanc Books.

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Views of Anna, At Twenty

1.

Anna doesn’t talk much anymore, so it’s hard to know what she makes of turning twenty. I know what I make of it: a strange mélange of astonishment / anxiety / sorrow / joy.

She is alive, that’s one thing. Now and then she still beams up at me with her gorgeous smile. But she is increasingly fragile, coughs prodigiously, is not always present. And at night, she is restless, sometimes sad.

Hours can go by now without her uttering a word — a child who loved to chat, who asked endless questions, who laughed easily, ardently. Sometimes, out of the blue, she will begin to chatter to me but she quickly runs out of steam, or lapses into semi-intelligibility.

When we play the piano together or if I put on one of her beloved concert DVDs, she still sings. Oh, how she loves to sing, a crazy croak really, what her mom called Anna’s whiskey voice. But often lately, it sounds like she is gargling rather than singing, as if she were drowning in her own secretions.

Yet here she is, alert and squirming in her wheelchair. She is wearing — and pleased by — the flowery shirt I bought for her birthday. She is trying hard to clear her throat of the huge clods of mucous, as I clumsily brush her hair back, then begin her morning tube-feeding.

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2.

Anna was adopted from Hangzhou, China. She was seven months old when we got her, sweetest, most beautiful baby anyone had seen. Strangers would stop us on the streets of Manhattan to exclaim at her loveliness. If we happened to meet someone from China, she would coo and pet Anna, and often declaim, as if it were the chorus to a well-known song, Most beautiful girls in China come from Hangzhou.

At 5, after a freak accident, which landed her in the grim emergency room of St. Vincent’s Hospital, she was found to have an enlarged liver and spleen. This was followed by stressful visits to seven different specialists over seven months, at last leading us to the Mayo Clinic, where she was diagnosed with the dreadful degenerative neuromuscular disease Niemann-Pick C.

I have written about this before.

At times, I feel certain that I have said every word which could ever be said about the fraught journey of our life together. Or, as Snow White declares in Barthelme’s great pastiche, OH I wish there were some words in the world that were not the words I always hear.

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3.

Only about 500 people in the world are known to suffer from Niemann-Pick C. Partially, that’s because the disease is notoriously hard to diagnose. Although both of Anna’s birth parents had to carry the gene, no one in China in 1995 would have recognized this — the symptoms in children born with this disease are rarely detected until something else brings them to a hospital.

But also — let’s be blunt — the reason there are so few cases is that kids with Niemann-Pick C almost never make it to adulthood.

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4.

“They told us you wouldn’t make it to sixteen, Miss Anna,” I point out, as we go through the increasingly onerous routine required to get her ready for school. “And you are twenty! And I am proud of you, and OK, I am a little proud of myself too, because who got you to this point? Me!”

On school days, as I am trying to spoon applesauce laced with seizure meds into her mouth while simultaneously feeding her a nutrition shake through her G-tube, I often keep up a steady stream of patter, to stand in for the labored yet more satisfying conversations we used to have, when she was still able to converse.

One of the many manifestations of Niemann-Pick C is the gradual loss of movement and speech. Anna ran and danced until she was 12, when she began to teeter and fall many times a day. She has been in a wheelchair since she was 14. The speech gradually ebbed too, though its decline has been far more puzzling. Anna will sometimes speak a full sentence clearly, then not utter another sound for the rest of the day.

She reaches out for the spoon, wants to shove more applesauce into her rosebud mouth but I gently stop her. A kid who loved to eat, any mouthful now is likely to cause her to cough, choke, aspirate.

“It’s not fair,” I tell her for the umpteenth time. “It shouldn’t be this way. You can’t even have cake on your birthday. I’m sorry, Sweetheart. But you know why, right?”

Does she know why? Anna has always been a kid who understood more than anyone thought she did. Many times I have talked with her younger sister Jane about Anna’s illness right in front of Anna, uncertain what she made of it, only to hear her murmur, Stupid old Niemann-Pick.

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5.

A few days ago, we were pounding on our ancient, out-of-tune piano, singing old show tunes, which Anna loves. I was thinking about my late wife Kate, whose tragically early death 3 years ago was as devastating to my daughters and me as you might imagine. Her photo sits atop the piano, and I often glance at it as I am playing.

I was thinking about how amazed, how lifted up Kate would be, knowing that Anna was turning 20, a day we thought we would never see.

I played some songs which reminded me of Kate, and eventually, I got to “Every Time We say Goodbye,” a Cole Porter torch song, which I played over and over during the 6 weeks Kate spent dying in New York Hospital Hell. It never fails to smack me in the face:

Every time we say goodbye I want to die a little/Every time we say goodbye, I wonder why a little/Why the gods above me, who should be in the know/Think so little of me/They allowed you to go…

As I played it that evening, I had to stop. “You know who this makes me think of, right?” I asked Anna.

She looked up at me with her soulful black eyes. She hadn’t said a word all night. “Mommy,” she whispered.

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6.

When Anna turned 12, she began having seizures, at first only occasionally, then every day, then three or four or five times a day. “Why now?” I asked the neurologist.

“Puberty,” he shrugged. “And dying brain cells.”

Along with the seizures, everything started to deteriorate. Anna’s health and functioning had been pretty much status quo until then; at times, we could almost beguile ourselves with the idea that the illness was not progressing. When it did begin to slide downhill, I had terrible, recurring nightmares: Anna lost in a forest, crying out to me, begging me to find her, help her. I thrash about, I try to move, I can see her, hear her cries, cannot reach her.

The nightmares went on for months.

At Kate’s insistence, I tried antidepressants. I hated them. I felt like I was constantly coming down from a really bad acid trip, and one evening I scooped up the pills and threw them into the garbage. Kate called me a Zoloft dropout, which made me laugh, and not much made me laugh at that point.

I was struggling at the time with my second novel, The Buddha Train, but all I was thinking about was Anna, and my nightmares, and my fear of losing her, the somewhat inchoate impression of her being called away, yanked out of my world and into another.

When I confided those dark images to my friend Lucy, she said, “That’s the novel you should be writing.”

I knew, even as she said it, that she was right.

So, I put aside The Buddha Train. The first line I wrote down for my new novel was this: Nadia called me a Zoloft dropout last night and she wasn’t smiling. The first blip of imagery which popped into mind was my recurring lost-in-the-forest nightmare, so I gave those dreams to the narrator, and began Come Away.

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7.

At her gala 20th birthday party, Anna’s uncle plays his ukulele and sings some of her favorite songs. He sings “You Ain’t Goin Nowhere,” “Sidewalks of New York,” and the obscure Beatles gem, “Anna.”

Anna claps and beams. When he sings the Grateful Dead’s “Box of Rain,” Jane turns to me. “Isn’t that song in your new book, Daddy?” she asks.

Come Away is lying on top of a pile of birthday cards, and she snatches it up and brings it to me. I flip through it. Like everything I’ve ever written, I feel a vague warmth toward it, while at the same time dreading to actually look at it. I point to the last line of the song, repeated throughout the novel as a sort of glittering thread: Such a long long time to be gone and a short time to be there.

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8.

Anna is so small and frail. Her 14 year old sister now towers over her. She has lost weight steadily over the past few years as she has become less and less able to swallow. In August, she came down with a terrifying case of double pneumonia — probably a cold which caused her to aspirate her own fluids or some unsuccessfully processed bit of pureed food. On the morning I finally called the ambulance, her face was bright red. She was burning up with fever, barely able to breathe, and I wept, and cursed myself for waiting so long, and wordlessly apologized to Kate’s photo.

“She will probably not recover,” they told me repeatedly in the Pediatric ICU.

But she did recover. “She is an amazing survivor!” her aunt exclaims at the party, and it’s true. Her persistence — sometimes to the point of aggravation — astonishes. If I gently push her hand away from the applesauce, or from the tube which carries the nutrition shake into her stomach, or from any of the many things she longs to hold, taste, fiddle with, she will continue to reach out, reach out again and again even when whatever she is seeking has been moved far away.

Like her beautiful dead mom, who confounded her doctors by refusing to die though she had a giant tumor wrapped around her lung, Anna, at 20, persists in being herself. She knows, intuitively, what that Grateful Dead song means.

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9.

But I didn’t want to make Come Away about stupid old Niemann-Pick. I didn’t want to give it that much attention, or make Anna’s life about her illness. If I wanted to write a memoir, I told myself, I would write a memoir.

Like this one.

Instead, I wanted to transmogrify the dark shadow of losing Anna into an image that might resonate for others. I have always been drawn to the supernatural — not as a belief system but as a metaphor for all we cannot comprehend about our world, for all the mysterious obstacles and accidents which pit our path. So, as I wrote about Anna, I stitched in other threads. The sinister lore of the changeling child, the creepy legend of the Green Children of Woolpit, the strange occult paintings of the mad Victorian artist Richard Dadd, all were woven into the cloth of my more quotidian fears, my yearning to make something shine out from the darkness of Anna’s life.

The Grateful Dead ended up in there too, and the plangent chorus of Yeats’s famous poem, “The Lost Child:”

Come Away, O human child/To the waters and the wild/For the world’s more full of weeping/Than you can understand.

I finished the first draft of Come Away on the day Kate died; when the book came out last November, Anna was in the hospital again with another episode of pneumonia. Yeats knew what he was talking about.

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10.

Anathematization of the world is not an adequate response to the world.
— Donald Barthelme

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11.

It is 9 degrees in New York on the night of Anna’s party, and no one wants to go outside to set off the Chinese confetti cannons with which we have traditionally ended her birthday celebrations. I glance over at Kate’s picture. Is she glowering at me? She certainly would have insisted on the tradition (and she was not someone to be easily denied) but as so often in the past three years, we have to do what we can do, so we drink and eat and sing Happy Birthday. Anna gets a foot and hand massage from her aunt; a babysitter gives her the meds and the feeds so that I can (sort of) socialize. But Anna doesn’t say anything, not a word, even to her oldest friend who has come home from college to help us celebrate.

Later, after the guests drift out, I get Anna ready for bed. She is smiling a little, as if to herself. I hoist her into bed, kiss her forehead.

“I hope you had fun at your party,” I say.

And then, as I turn off the light, I think — no, I am sure, I am sure — I hear the faint sweet rasp of her whisper, “I’m 20!”

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