At first I couldn’t read Emily Rapp’s memoir, The Still Point of the Turning World, about her son, Ronan, who was diagnosed with Tay-Sachs disease at an eye doctor appointment when he was 9 months old. She learned then about the rapidly progressing disease that would lead to his death a couple of years later. I kept putting the book down, losing it somewhere in my house, getting distracted, picking up other books. This was not because the book wasn’t very good, but because it was.
Rapp is a deep and gifted storyteller. “What I was being asked to do,” she writes, “felt both entirely instinctive and completely impossible.” At one point, she describes a scene where she puts away the toys that Ronan can no longer play with, not because he outgrows them but because he has lost the ability to play with them.
At first I thought maybe the book was too harrowing to read. There are piles of books in my room. Why read this one? Often one reads memoirs or novels to be transported to another place, to India, to a 19th-century country estate, but this is a place that no one in her right mind would want to be transported to.
And yet, when I finally settled down with the book in the middle of the night, and read it all at once without stopping, I felt something like guilt, some feeling that I should be looking away, averting my eyes, losing the book again somewhere in my house. It seemed to me that my great desire to know more was somehow suspect, that it involved a curiosity, a kind of voyeurism or uncomfortable fascination that somehow shouldn’t be indulged. (Though clearly Rapp wrote the book to find readers.)
My avidness made me think about what lies behind our appetite for stories of extreme suffering, for descriptions of terrible things happening to babies and tiny children, for the well-narrated, almost unbearable heartbreak that Rapp’s book represents?
The emotional complexity of reading The Still Point of the Turning World is that you may care about Ronan and you may be invested in Rapp’s generous, sharp, poetic vision of the world, but you do not know them. Though you will feel grief, you are not feeling the grief that someone who loves them feels. In a sense, though, you are rehearsing that grief, you are working through it, examining it, trying it on, wondering what it would be like. This seems like a morally complicated act to me, though someone less critical might call it empathy.
The uneasiness I felt reminds me of reading tragic stories about babies in tabloids like the New York Post, the tricky voyeurism, which is not in that case transformed by the fact that what you are reading is art or contains within it beautiful things or interesting insights. I remember, for example, the story of a baby who was killed outside the Central Park Zoo by a falling branch. The family, visiting from Union City, N.J., was in the city for a day. The father was taking a picture on the promenade outside the sea lion exhibit near the animal clock, while the mother was holding the baby when a rotting branch fell from 25 feet above them. The baby’s name was Gianna Ricciutti, and she was 6 months old. A photograph of her accompanying the article shows a dark haired, pretty baby beaming up at her mother in some unknown leafy place.
I read the continuation of the story on a later page. I thought about the parents. I felt sick about the baby. I read the follow-ups to the story, which were largely about trees and the park department. Somehow I felt like I needed to know more. But what other detail was I looking for? What else did I need to read? Maybe it was the line that explained why this particular thing happened to this particular baby. Was I telling myself that in a world of rotting branches on glorious days, my own baby was safely sleeping in a green-painted crib in a room near the garden? Was I trying to prove that this specific tragedy happened to this specific baby and in fact had nothing at all to do with anything that could in any way happen to my baby?
As Freud put it, “Our habit is to lay stress on the fortuitous causation of the death—accident, disease, infection, advanced age; in this way we betray our effort to reduce death from a necessity to a chance event.” The more detail we can consume about a death, the easier it is to reduce it to a chance event; the deeper we go into its specificity, the less we face our own abject vulnerability.
Our fear, then, is entwined with our fascination, our denial wrapped up with our voyeurism. In one of the best passages of the book, Rapp blows through our denial with a description of “dragon parents” who have terminally ill babies and children—this is in contrast to “tiger moms” who are fiercely exhorting their children to succeed:
Dragons are scary. Our grief is primal and unwieldy and it embarrasses people. Talking about end-of-life care decisions for our babies to a bunch of parents with typically developing kids is tantamount to breathing fire at a dinner party or on the playground. Nobody wants to see what we see so clearly. Nobody wants to know the truth about their children, about themselves: that none of it is forever.
Rapp writes toward the end of her memoir about a visiting a Zen center. During the first meal she tells one of the officiants about Ronan. The officiant nods calmly and does not react with “histrionics.” Rapp is relieved, aware suddenly of the burden of other people’s reactions, the drain of managing other people’s emotions, because this Zen woman does not have a reaction. Rapp writes, “Here I had tossed death across the table at a stranger who looked straight at it without blinking.” In some sense that is what The Still Point of the Turning World allows us to do: look at death without blinking. It offers us the precise combination of vividness and distance necessary to think through the unthinkable.