The Best Book You’ll Hate Reading

the little sealEveryone loves to tell you your life is going to change after having kids—that things will never be the same, but that you’ll discover a love you never imagined you could feel, filling you up and overflowing.

What they don’t usually mention is the fear. The knowledge that so many terrible things can go wrong. That the world can be a bright and beautiful place, but also a cold and hard one, and that your child will experience a measure of both.

The Still Point of the Turning World is the story of a mother for whom all those fears became suddenly, crushingly immediate.

Writer Emily Rapp (author of a respected memoir about growing up with a disability that requires her to wear an artificial limb) saw her future collapse in on itself one January day in 2011 when she took her infant son Ronan to the doctor for an eye exam and learned he had Tay-Sachs disease, a debilitative genetic disorder that is always fatal, that cannot be treated or cured, only managed. She knew what Tay-Sachs was, had asked specifically to have it included in her prenatal screenings, though she was considered low risk. The results were negative, but she had only been tested for the most common form of the illness. Ronan’s mutated gene was far rarer, and no one saw it coming. As soon as Rapp heard the doctor pronounce the diagnosis, she knew that Ronan would die, was already dying. Most Tay-Sachs sufferers live fewer than three years.

For Rapp, a writer all her life, the only answer—the only way to cope, to fumble about for some meaning in hopelessness—was to write, and to share Ronan with the world. But this isn’t a grueling chronicle of seizures and feeding tubes. It is Emily Rapp, naked on the page, trying to figure out what it means to be a mother, what it means to parent a dying child, what it means to die, and what it means to go on living. It is achingly sad. It is also immensely cathartic. Stripped of everything, Rapp searches for answers in poetry, philosophy, and literature (in particular, Mary Shelley’s Frankenstein, about another person who finds the burden of creating life heavier than expected), and in the blessedly mundane everyday work of caring for Ronan, who, even as he loses his senses and his ability to giggle and crawl and hold his head up, is still the center of her world. She calls herself a dragon mother: “Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice… We have an under-appreciated ability to make people face their worst fears. Our scales act like mirrors and our news looks dreadful.”

This book is not a traditional memoir, perhaps because it didn’t start out as one. It is a Frankenstein itself, assembled from material published in essays for Salon and The Rumpus and, primarily, from Rapp’s blog for Ronan, Our Little Seal (the English translation of his name), and wrestled only somewhat successfully into a coherent narrative. Along the way, Rapp made the decision to shift from the present tense of the daily blogs to the past tense; though Ronan was still living when the book was finished, it was clear that even if he lived to see its publication, for most readers, his story would exist only in the past (in fact, he died on February 15, about three weeks before the book’s long-scheduled release date). Keeping it in present tense, Rapp told The Rumpus, would have made it “too intense” in book form. It’s true that the bound copy feels more reflective and less raw. I can’t say the tense switch makes the book less powerful (though I do miss the feel of the original work), but it is definitely a different beast. Perhaps there is only so much sadness two covers can contain.

My wife calls Rapp’s writing some of the best work she has ever hated reading. She followed Ronan’s story on Rapp’s blog and through her essays, an experience made only more difficult by the fact that, at the same time, she was pregnant with our daughter, and then later, watching her grow, blowing past milestones Ronan would never reach. Every once in a while I walked into the living room to find her hunched over the laptop, quietly crying. The night we learned Ronan had died, I awoke to her sobbing next to me. Immediately, I knew why. I, too, responded intensely to Rapp’s writing. I, who used to say that it was rare for a book to make me laugh or cry, couldn’t get through more than a few paragraphs of one of Rapp’s posts without turning away, lest I be swallowed whole by grief. (That will teach me to surf the internet at work.)

It is strange, mourning so strongly a boy we’ve never met and will never know. But thanks to his mother, we do know his story. I have been changed by it. It’s weird to recommend a book that will make readers feel so terrible, but I think the rewards are worth the discomfort. Ronan was not a martyr or a symbol or a lesson or an object of pity. He was a little boy. Emily Rapp has given him new life as a story: “In that gap where he existed, there was no map for his meaning. But there will be, I thought. If Ronan needed a myth, I would write one.”

She has. Ronan lives on.

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