“This is going to sound bad,” I tell my therapist, “but I almost wish I had Tay-Sachs.” I get a funny look from her, and of course I don’t dream of having a disease that slowly peels away the layers of my faculties to the point of blindness, deafness, paralysis, and an eventual, often welcome death. What I mean, in my couch contemplation, is that I want the silver lining of having this genetic disorder as an infant. Nonetheless, this sounds equally perverse. Emily Rapp, whose son was born with the disease, writes of it more eloquently:
For Ronan there was no sense to be made, no change to seek out, no potential to actualize. His life was a collection of singular, unrepeatable moments that were not analyzed, remembered or regretted ….
Pure experience without editorializing by the intellect.
Because Rapp’s son never had the time on this earth to develop any understanding, she imagines that he lived in a state of first wonder. “Was Ronan unhappy? No. He had no label for that,” she writes. Similarly, I find it difficult to attach a label to Rapp’s second book.
The Still Point of the Turning World could be classified as a memoir, a self-help guide, an instruction manual, and even a primer on the recessive genetic disorder known as Tay-Sachs. However categorized, it’s nothing short of profoundly poignant. This isn’t the first time Rapp, a Harvard Divinity School graduate, Fulbright scholar, and creative writing professor, has publicly reflectedon a disability. Her first book, Poster Child, chronicled her experience growing up after having her left leg amputated due to a congenital birth defect. The experience left her with “[t]he notion that happiness and fulfillment hinge upon radical transformation,” and she writes that the fortitude she developed as a child with a disability prepared her for a struggle that has proved more difficult by orders of magnitude: “How do you parent without a future?”
When Rapp’s son, Ronan, was nine months old, a doctor told her and her husband that Ronan had Tay-Sachs, “a rare, progressive and always fatal condition with no treatment and no cure.” The news couldn’t be readily assimilated. “How could I still be alive … having been given this knowledge?” she ponders. “It was grotesque and absurd and could not be happening.” After crying, screaming, doubting, hallucinating, and medicating, Rapp began to write.
Often on a couch with her arms stretched around Ronan, she would type on her laptop—”grief … demands so much work that what comes up must be heaved onto the page immediately; otherwise it might eat the thinker alive, drown them.” She quotes Seamus Heaney: “It steadies me to tell these things.”
The books on grief she consults frustrate her because they do not rise to the level of her suffering, and she guides the reader down a track of logic we’ve all likely attempted to justify.
My initial reaction to these books … assumed the existence of a ladder of loss and a method for placing a person’s sadness on a particular rung. So … what, on the lower rung the loss of a pet fish? On the upper rung the loss of a parent, a spouse or a child? … What if the parent or spouse or baby was suffering for years or months or even for just one minute, then what? This … hierarchy … was obviously ludicrous.
Rapp writes what she thinks and what we think but are too afraid or embarrassed to say.
This carefully curated assemblage of memories, conversations, poems, and literary passages provides a commentary on the anxiousness that haunts all of us, the unrest that grinds deeper the more we fight it, by pointing out Ronan’s ability to escape it without even trying. “Everyone needs to be pursuing something, right? Otherwise, who are we?” writes Rapp. But Ronan “could stay a beautiful acorn; he didn’t need to grow into a tree or realize this potential. He disproved Aristotle’s teleological theory that potential is the key to life.”
Despite Rapp’s claiming to be “a former Christian,” God and her own theological ruminations play a large enough role in her story to make the reader question whether “former” truly applies. Her realization that “this great capacity to love and be happy can be experienced only with this great risk of having happiness taken from you ” evokes the tale of another parent losing His son. She also discovers solace in Simone Weil’s “notion of waiting for God, not as a passive action but as a patient practice”:
If Jesus were alive and I jostled up to him in a crowed with Ronan in my arms and touched his cloak, … Ronan would not start walking and talking and holding his head up without assistance. But as a result of the teachings of Jesus, people might regard Ronan … differently, and with respect: the outcasts, the outsiders, brought into the communal fold.
Writing as therapy, attending awareness conferences, and learning from parents who have let their children go or are in the parallel process of doing so: all this helps Rapp deal with bringing blissful love into this world only to lose it before the recipient can acknowledge it. But perhaps the most powerful, and least employed, force in the everlasting fight for dealing with the certainty of death is facing it. Andrew Sullivan, commenting on a review of Christopher Hitchens’ Morality, notes,
We will all die. We should not seek it. But we should not flee from it for ever …. [A]t some point what seems to me to matter more is not the length of our lives but the content of them and the manner of our deaths. At some point, medicine is a function of a social disease of modernity: the flight from our own mortality. But fleeing it does not defuse it. Only facing it does.
Writing “with blood,” Rapp never ceases to face death—a very particular death. But in the midst of this drawn-out encounter with a “grief that would hijack a part of our day for the rest of our lives,” she keeps circling back to the deceptively simple question that set this book in motion: “What can be learned from a dying baby?”
Win Bassett is a writer, lawyer, and entering Yale Divinity School student who has written for The Huffington Post, Patheos, and other publications. He has forthcoming pieces for The Paris Review and Publishers Weekly. Find him at winbassett.com and on Twitter at @winbassett.
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