Black and I are talking on the phone about resilience, grief and writing, three things about which we both have many thoughts and feelings. Black’s 2013 memoir, “The Still Point of the Turning World,” introduced us to Ronan, her infant son, who had been diagnosed with a rare terminal illness, Tay-Sachs disease, that destroys nerve cells in the brain and spinal cord. The diagnosis changed Black’s life forever. As she writes, “I had the sensation of skin falling away from bone. My life, the life as a new and hopeful mother, was over.”
But life, if you survive it, takes unexpected turns. And that thrashed Phoenix can still fly.
This obsession with absence, the intentional erasure of self and surroundings, is the apotheosis of what I’ve come to think of as a culture of negation: a body of cultural output, from material goods to entertainment franchises to lifestyle fads, that evinces a desire to reject the overstimulation that defines contemporary existence. This retreat, which took hold in the decade before the pandemic, betrays a grim undercurrent: a deepening failure of optimism in the possibilities of our future, a disillusionment that Covid-19 and its economic crisis have only intensified. It’s as if we want to get rid of everything in advance, including our expectations, so that we won’t have anything left to lose.
What stops her is not grit or bravery or strength. She does not summon an inner resilience — a word she will examine (and dismantle) in great detail. Instead, Rapp Black chooses to live after experiencing two potentially conflicting thoughts: “I don’t want to live my life, this life,” and “I don’t want to end my life, this life.” As much as she wants to stop her son’s suffering and escape the unbearable waiting for his death, she also wants to love again, “to know hope and happiness, to be in the world, doing work that feels real and meaningful.”
That work is made manifest in Sanctuary, in which Rapp Black tells of falling in love and becoming a mother again after Ronan dies in February 2013.
We were told that it is dangerous to touch
And yet we journeyed here, where what we believe
Meets what must be done. You want to see, in spite
Of my mask, my face. We imagine, in time