March 17, 2017 by Allison Gilbert
Emily Rapp Black lost her son when he was nearly 3 years old. Ronan died of Tay-Sachs disease, a rare genetic disorder that slowly and irreversibly destroyed his nervous system. Emily wrote her New York Times bestselling memoir, The Still Point of the Turning World, as a means to grapple with her unimaginable grief.
I first met Emily when she responded to a guest blog post I wrote about my book Parentless Parents. Emily’s son had been diagnosed with this always-fatal illness when she told me she’d already discovered an unexpected and extraordinary lesson. “As a writer,” she reflected, “I was shocked to discover that the experience of horrible grief actually galvanized me to write in a way I had not in years.” Emily, without warning, had hit on an essential truth about grief and resilience: our deepest sorrow can spark tremendous creativity and fuel our capacity to rebound and move forward.
Emily is now an Assistant Professor of Creative Writing at UC-Riverside and her latest book, Casa Azul Cripple, is coming out in 2018. The book explores the intersection of pain, art, and disability through the life and work of Frida Kahlo.
Allison: What one memento reminds you most of Ronan?
Emily: I have a plaster cast of Ronan’s hand that an artist friend, Terri Rolland, made for him in the weeks before he died.
Allison: Where do you keep the plaster cast?
Emily: It is safe on a special shelf with my girlfriend Weber, in her Boston apartment, along with pictures of her daughter, Violet. I like the idea of his hand being there, in my friend’s home, because it feels like a physical reminder that his presence resonated with so many people, and that his short life had meaning and import.
Allison: Being proactive about remembering loved ones makes us happier. Have you found this to be the case?
Emily: I think it makes us feel more connected, and so it’s a kind of happiness, but with a bit of blood in it, if you will. I think it’s good to understand that part of moving ahead with purpose and joy is to be able to hold the “both/and.” To both miss the person AND understand that their suffering is over. So moving on is not casting off those memories, but understanding how to incorporate them into the lived experience of the every day without that person. (To read more about how we can all live our fullest lives when we accept that absence and presence can coexist, read my article featured in O, the Oprah Magazine).
Allison: What do you know now about keeping the memory of Ronan one alive that you didn’t know when he died?
Emily: How important it is, and also, how difficult it can be: that revisiting that pain can be something we’d rather avoid, but that it’s necessary.
Allison: Loss is a great teacher. In what way have you derived greater joy and meaning from life following loss?
Emily: Parenting Ronan changed my life in every significant way. It made me let go of the worry and care about what people thought of me, my work, my body, or my choices. It made my writing more fierce, honest, and frankly, better. It has galvanized a passion for pediatric hospice, and for igniting conversations about quality of life and end of life care. It taught me how much the world belongs to everyone, without exception.
Originally published at allisongilbert.com on March 17, 2017.