Reading Fierce Joy: A Memoir (Greenpoint Press, $20) offers entry to one woman’s extraordinary journey inside the world of illness, along with her honest response to its repercussions. Ellen Schecter takes us through the process of her initial diagnosis of lupus, and continues to keep us with her through her years of bodily deterioration and psychological resilience.
When we first meet Ellen, she is a vibrant wife and mother, a career woman with a stellar resume in the areas of children’s television production and writing. As she engages us in her medical drama, she is unflinching in describing the pain and loss, as well as the strategies and insights she struggles to develop in response to her illness. Schecter offers us an understanding of what worked for her and what didn’t, the kindness and compassion of some doctors and the lack of these qualities in others. She writes lyrically of the power of therapy, song, meditation, friendship, love, asking for help, and finally of the transformative possibilities of prayer and community.
In describing a meeting at the NY Jewish Healing Center, Schecter writes:
Simkha begins to hum a melody, then stops. “Each week,” he says, “I’d like to begin and end with a niggun — a wordless, ancient melody…” One by one, we pick up the melody and make it stronger. It’s as if the music not only rises out of our throats, but out of some shared memory — of women singing under the willows in some primeval wadi… “In the Jewish tradition,” Simkha says softly into the silence, “you are not to be sick alone; you are not expected to heal alone. Even a niggun is not supposed to be sung alone. There is no healing without community.”
This is not a book which awkwardly insists that “every cloud has a silver lining” or that it’s better to be sick than well. Rather, Schecter confronts the harsh realities of her life and her losses, such as her necessary reliance on crutches and braces, or being forced to leave her professional life behind. Of the crutches, her friend Carmen, also a lupus patient, tells her, “It doesn’t matter how you get there, girlfriend: just get there.” She asks us to confront our own prejudices and anxieties as she describes the responses of friends, co-workers and people on the street to her increasingly obvious disabilities. She takes us with her as she reclaims and redefines her life, one step at a time.
Schecter, who wrote about a painful family Seder in Lilith [Winter 2011-2012], comes from an assimilated Jewish family, where, nonetheless, there were awful family fights over her childhood wish for a Christmas tree. It is all the more poignant and moving to hear of the power of her adult self’s encounter with Jewish community and communal prayer, both at B’nai Jeshurun and the NY Jewish Healing Center: “The prayers enable me to honor my losses without being engulfed by them… . I realize I’m not limited to the prison of the faltering wreck of my body… Listen: I have a soul. How astonishing…. But now, as I embrace my soul, my pained body drops away as a tattered shawl, and I’m suddenly flooded with gratitude….”
Although Schecter had to give up her outside career, she decides in the course of her illness that she will always be a writer. She wants to share the fierce joy that she discovers and embraces to get through each day. As a reader, you are pulled into her world, with prose which combines the rawness of immanence and the luminosity of transcendence.
Nechama Liss-Levinson is a psychologist and author of five children’s books. Her most recent is When the Hurricane Came [see page 46].