The Still Point of the Turning World
Emily Rapp, 2013
Penguin Group USA
272 pp.
ISBN-13: 9781594205125
Summary
Like all mothers, Emily Rapp had ambitious plans for her first and only child, Ronan. He would be smart, loyal, physically fearless, and level-headed, but fun. He would be good at crossword puzzles like his father. He would be an avid skier like his mother. Rapp would speak to him in foreign languages and give him the best education.
But all of these plans changed when Ronan was diagnosed at nine months old with Tay-Sachs disease, a rare and always-fatal degenerative disorder. Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months.
Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting. They would have to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future.
The Still Point of the Turning World is the story of a mother’s journey through grief and beyond it. Rapp’s response to her son’s diagnosis was a belief that she needed to "make my world big"—to make sense of her family’s situation through art, literature, philosophy, theology and myth.
Drawing on a broad range of thinkers and writers, from C.S. Lewis to Sylvia Plath, Hegel to Mary Shelley’s Frankenstein, Rapp learns what wisdom there is to be gained from parenting a terminally ill child. In luminous, exquisitely moving prose she re-examines our most fundamental assumptions about what it means to be a good parent, to be a success, and to live a meaningful life. (From the publisher.)
Author Bio
• Birth—July 12, 1974
• Where—Grand Island, Nebraska, USA
• Raised—Nebraska, Wyoming, and Colorado
• Education—B.A., St. Olaf College; M.A., Harvard
University; M.F.A., University of Texas, Austin
• Currently—lives in Sante Fe, New Mexico
Emily Susan Rapp is an American memoirist. When she was six years old, she was chosen as the poster child for the March of Dimes, due to a congenital birth defect that resulted in the amputation of her leg.
As of 2013, she has written two memoirs: Poster Child (2007), which presents her life as an amputee, and The Still Point of the Turning World (2013), the story of the birth of her child and his diagnoses of Tay-Sachs disease.
Rapp is a former Fulbright scholar and recipient of the James A. Michener Fellowship. As of 2013, she is a professor of Creative Writing and Literature at the Santa Fe University of Art and Design in Santa Fe, New Mexico.
Childhood
Emily Susan Rapp was in Grand Island, Nebraska but was raised in Laramie, Wyoming; Kearney, Nebraska and Denver, Colorado. She and her older brother were the children of a Lutheran pastor (their father) and a school nurse (their mother). At age four, her left leg was amputated above the knee as the result of a congenital birth defect called proximal femoral focal deficiency. She has worn a prosthetic leg ever since. At age six, she was named as the poster child for the March of Dimes in Wyoming. She was trained as a downhill skier at the Center for Disabled Sports in Winter Park, Colorado.
Education
Rapp received her B.A. in Religion and Women's Studies from Saint Olaf College. She has an M.A. in Theological Studies from Harvard University and an M.F.A. in Creative Writing from the University of Texas at Austin, where she was a James A. Michener Fellow. She has attended Trinity College in Ireland. In 1996 she received a Fulbright Fellowship to Seoul, South Korea.
Personal
In January 2011, Rapp and her husband, Rick Louis, learned that their son, Ronan Christopher Louis, had classic infantile Tay-Sachs disease. Babies with this disease, according to the National Tay-Sachs and Allied Diseases Association, "the first signs of Tay-Sachs disease can vary and are evident at different ages in affected children. Initially, development slows, there is a loss of peripheral vision, and the child exhibits an abnormal startle response. By about 2 years of age, most children experience recurrent seizures and diminishing mental function....
Rapp began the blog Little Seal to chronicle her life with Ronan and dealing with the disease. She writes in this first post...
The narrative is empty. There is only a sense of hollowness, blackness, void, of wanting to literally crawl out of my own skin. Even this description is not sufficient. But I am a writer. I write. And just as I have written through every experience, euphoric or horrific, throughout my life, I will write my way through this, and I hope those of you who know and love Rick and me and Ronan will be a part of this record of his time here, on this blog ...
On February 15, 2013, her son Ronan passed away in Sante Fe, New Mexico, where the family resides.
Professional background
Writing
Rapp published her first memoir Poster Child in 2007, detailing her life as an amputee. She has written,
[The] notion, that happiness and fulfillment hinge upon radical transformation, has followed me throughout my life. From an early age, I had fantasies of being "healed" of my disability, a miracle I envisioned as rather more Disney than biblical.
Her 2013 memoir, The Still Point of the Turning World, shares shares the author's life and experiences following her son's diagnosis at nine months old with a degenerative disorder known as Tay-Sachs
Rapp has received awards and recognition for her short stories, poems and essays from The Atlantic Monthly, StoryQuarterly, the Mary Roberts Rinehart Foundation, the Jentel Arts Foundation, the Corporation of Yaddo, the Fine Arts Work Center in Provincetown, Rhode Island, and the Valparaiso Foundation.
Her work has appeared in the Los Angeles Times, salon.com, The Sun, Texas Observer, and Body & Soul. She has taught writing in the MFA program at Antioch University, Los Angeles; The Taos Writers' Workshop in New Mexico; the MFA program at the University of California, Riverside; and the Gotham Writers' Workshop.
As of 2013, she is a professor of Creative Writing and Literature at the Santa Fe University of Art and Design in Santa Fe, New Mexico. She travels frequently to schools and universities to talk about issues of the body, illness, and the creative process. (Author bio adapted from Wikipedia.)
Book Reviews
Rapp has an emotional accessibility reminiscent of Wild author Cheryl Strayed; her unique experiences have a touch of the universal. She comes across as open, midthought. In her book, she wrestles with the ideas of luck and sentimentality and life and love and often circles back, unresolved. Despite being a former divinity student, she bypasses religion for literature, seeking meaning in poetry, myth and, especially, Frankenstein and its author, Mary Shelley.... Her kind of parent? The dragon mother: powerful, sometimes terrifying, full of fire and magic.
Carolyn Kellogg - Los Angeles Times
Rapp...delineates a bracing, heartbreaking countdown in the life of her terminally ill son. At age nine months, Ronan was diagnosed with Tay-Sachs.... Ronan's "death sentence" was for Rapp and her husband, Rick, living in Santa Fe, a time of grief, reckoning, and learning how to live, and her elegant, restrained work flows with reflections.... Her narrative does not follow Ronan as far as his death, but gleans lessons from Buddhism.... Unflinching and unsentimental, Rapp's work lends a useful, compassionate, healing message for suffering parents and caregivers.
Publishers Weekly
A passionate, potent chronicle of the author's last months with her son..... The author describes her moving struggle to make each day spent with her son memorable and to savor her ability to mother during the time remaining. She also considers her son's disability in light of her own congenital deformity that led to the amputation of her left leg.... Searching for spiritual solace, Rapp and her husband attended a Buddhist retreat and cherished the words of one of the teachers: "Remember there's a whole person behind whatever physical affect presents itself." A beautiful, searing exploration of the landscape of grief and a profound meditation on the meaning of life.
Kirkus Reviews
Discussion Questions
1. A topic Rapp discusses is the idea of wellness versus health—what is the difference between the two? Do you believe we tend to associate wellness with wholeness, and is this a fallacy?
2. In making decisions for Ronan’s palliative care, Rapp brings up the case of Baby Joseph and contends that the concept of life’s "value" should be replaced with the word "quality." What is the difference between the "value of life" and the "quality of life" and what do you think we prioritize in contemporary society?
3. Rapp refers to her and the other mothers of children with Tay-Sachs as "Dragon Mothers." What are the characteristics of a Dragon Mother and how do their priorities differ from those of other mothers?
4. In the days after Ronan’s diagnosis, Rapp has trouble with the one activity that she has always found solace in—reading. She can’t find any solace in books until she picks up a collection of myths. What about myths does Rapp find so appealing? How do they differ from the other forms of literature she discusses throughout the book?
5. At one point Rapp tells her husband, Rick, "It’s as if there’s another baby right behind this baby, and we’ll never get to meet him" (p. 75). What does she mean by this? And how does she reconcile this feeling with the baby she does have?
6. How is Ronan described in The Still Point of the Turning World? What language does Rapp use to describe him? What are the challenges of writing a portrait of a person without language? Does Rapp overcome them or embrace them?
7. Rapp writes that traditional parenting guides are of no help when it comes to being a mother to Ronan and in the end the only guide was her imagination (p. 176). What does this mean? In what ways do we see Rapp using her imagination as a guide throughout her memoir?
8. What are some examples of how Rapp’s own disability (the loss of her leg) teaches her how to be a mother to Ronan?
9. On page 54, Rapp suggests that there is a leap "from experience to meaning" and that we often let other people make it for us. What is the benefit of making this leap on our own, as Ronan must?
10. What is the role of Rapp’s husband, Rick, in the narrative? What are some moments in the memoir where Rapp describes their partnership? Would you say that they go through this experience alone, together, or both?
11. At one point, Rapp and her husband visit an animal hospice with Ronan. How does Rapp compare Ronan’s experience of life with those of the animals?
12. What is Rapp’s opinion of "future-focused" parenting?
13. With all the vocabulary at her disposal, why is the single, simple word "Gee" so meaningful to Rapp? (Questions issued by the publisher.)