Who is the person you carry? The one who died too soon, the one who, in honor and in protest, you furiously carry everywhere? My person is my best friend from college. For her, I carry a specific outrage that she had to leave her three beloved children. I know precisely the weight and heft to allot her dread because she described it to me on the phone nearly every day during the decade she navigated breast cancer.
How are we supposed to hold someone as they face the unthinkable? What do we say to their children? How do we watch them die? When are we allowed to laugh again?
When I picked up Emily Rapp Black’s memoir Sanctuary, it felt like a teacher had landed in my hands. Hers is the story no one wants: in 2011 Black’s baby son Ronan was diagnosed with Tay-Sachs, an incurable disease that would over the next two years cruelly shut down every part of him, and ultimately extinguish his life. “Everyone did everything I asked during those final days, but nobody could give me what I wanted, what I needed, what I had to have but could not have and would never have again: my son returned to me, his brain repaired, time unwound,” she writes. “I wanted nothing less than a new world and my son allowed to live within it.”
The great work of this memoir is not just that it grapples with the unthinkable—“How does one prepare to witness her child’s death?”—but that it urgently pushes past the worst possible thing to what lies beyond. For Black, that meant a broken child, a broken marriage, a broken woman. “This, then, was the wreckage from which we were expected to rise.”
Early in the story, Black finds new love and becomes a mother again, this time to her daughter Charlie. With this joy comes complexity, for the truth is there will be no “getting over it.” Now Black is two mothers at once, one grieving a lost boy and the other delighting in a healthy daughter. This leads us to the book’s essential question: “Lightning can strike the same place twice, three times; it can strike you all your life. Knowing this, how do we keep living?”
Sanctuary opens with Black standing on a bridge over a gorge during Ronan’s illness, considering jumping. She decides not to. “I don’t want to live my life, this life; I want my son’s suffering to end, and my own, and for this unbearable waiting for death to simply stop,” she writes. “I don’t want to end my life, this life. I want to love again, to know hope and happiness, to be in the world, doing work that feels real and meaningful.”
It is Black’s willingness to implicate herself that makes this book compulsively readable. “When I knew my marriage was over in all but legal name, I spent a night with a man I had long desired in a ratty hotel in Brooklyn where the bedsheets were made of paper and there were no locks on the doors.” By sharing how grief feels in her skin, Black demystifies it. “How the feeling of being wanted was so similar to feeling alive,” she writes. “I was ready and willing to shed any part of myself if it meant even a touch of relief.” At a grief retreat, she leads a discussion about something she jokingly calls “body shit.” “‘Come on down to body shit,’ I say. ‘We all have it!’… Just as grief reorders your emotional life, it rearranges your physical body.”
If Sanctuary’s narrative voice hits as uniquely credible, that’s because Black has traveled terrifying terrain as a writer before. “Tragedies are narratives with no place to go, no alternative endings to choose or create,” she writes. “No open doors, no thresholds, no light. They are narrative prisons.” She settled on her life’s work in graduate school, deciding that “navigating emotional territory through the written word would become my specialty.” Her first memoir, Poster Child, explored her childhood with a prosthetic leg, after a congenital birth defect resulted in an amputation at the age of four. Her 2014 memoir, The Still Point of the Turning World, grappled with Ronan’s diagnosis and the question of how to create a meaningful life for him during his limited time.
In the end, Sanctuary promises no cure. We learn there is no returning to the person Black was before, her path merging into something closer to the title of chapter fifteen, “The Art of Bearing Witness.” Ultimately, the narrator evokes the spirit of a fierce girlfriend, one with a wicked sense of humor and a deft command of the F-word, who whispers: You are not alone. I see you.
Recently I read a book review in which a mother’s grief was described as exhausting, her rendering of the ugly breakdown of a marriage unseemly. It was an analysis I found myself railing against. Losing the love of your life isn’t something one can box up and gift-wrap tastefully: it’s a plane crash, a world war, a total annihilation. An argument for making the story more palatable is an argument for a lie, as anyone who has ever had to rebuild herself can tell you.
In yoga there are certain poses called “heart openers” that require the chest, shoulders and neck to stretch open into an uncomfortable, vulnerable physical state. When I read memoir, I feel a similar opening in my mind, letting in—I hope—a little more love and imagination. Which is why words like “exhausting” and “unlikable” feel incompatible with the genre; they are heart-closing words, born from fear, with long histories of shrinking, silencing, shutting down and shaming. A woman’s truth is not exhausting; a woman’s truth is the truth. What is exhausting is our cultural insistence on judging some people as less entitled to grace than others.
Who wants to read about the cold terror of the night when newborn Charlie almost stops breathing? The wild and tumbling car sex with an unexpected lover just when Black decides she doesn’t deserve love? I do. Years ago, I read that the size of the grief matches the size of the love, an idea that hovers in my mind when I read Black’s work. I want to read her argument that a love that big exists.
As the title suggests, Sanctuary creates a safe space for grief in all its forms. “What a great relief to understand, or to work to believe, as was the case with me, that resilience isn’t a matter of flying over the mountain of grief into a new life; in fact, there is no willful action at all,” she writes. “Instead, a person dwells in the doorway, holding both lives, one on either side, trembling with grief and gratitude.”
I took a writing class with Black once, and after the workshopping was over, we students spontaneously conspired to get her talking about her own writing. Finally relenting, she astounded us with the scope of her projects. Now I have forgotten the specifics, but I remember exactly what I was thinking as I watched her speak: I have never seen someone so alive. It was like someone opened the blinds and let in the sun, the way Black lit up our small, beige classroom.
My best friend always bristled when people told her she was brave for having cancer. “I’m not brave. I don’t have a choice,” she’d say. I loved when she shared these intimacies with me. She was teaching me to bear witness. Loss will come for all of us. Books like Black’s offer us sanctuary, and remind us we are not alone.