Emily Susan Rapp
|Born||Emily Susan Rapp
July 12, 1974
Grand Island, Nebraska
Emily Susan Rapp (born July 12, 1974) 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[update], she has written two memoirs, including one that presents her life as an amputee and the another that tells the story of the birth of her child and his diagnoses of Tay-Sachs disease. She is a former Fulbright scholar and recipient of the James A. Michener Fellowship. As of 2013[update], she is a professor of Creative Writing and Literature at the Santa Fe University of Art and Design in Santa Fe, New Mexico.
Emily Susan Rapp was born on July 12, 1974, in Grand Island, Nebraska. Rapp was raised in Laramie, Wyoming; Kearney, Nebraska; and Denver, Colorado; by her father, a Lutheran pastor, and her mother, a school nurse. She has an older brother, Andrew, who is an attorney in Seattle. 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, Rapp 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.
In 1996, Rapp received a Fulbright Fellowship to Seoul, South Korea. She was educated at Harvard University, where she received a Masters in Theological Studies; Saint Olaf College, where she received a Bachelor of Arts in Religion and Women's Studies; Trinity College, Dublin; and the University of Texas at Austin, where she was a James A. Michener Fellow and received her Masters of Fine Arts degree in Creative Writing.
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, "Appear normal at birth and seems to develop normally until about six months of age. 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. ... Eventually, the child becomes blind, mentally retarded, paralyzed, and non-responsive to his or her environment."
Rapp began the blog Little Seal to chronicle her life with Ronan and dealing with the disease. She writes in the 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 Santa Fe, New Mexico, where the family resides.
Before entering Divinity School, Rapp worked in Geneva, Switzerland, Namibia, Hong Kong and Bangkok, Thailand for the Women's Desk of the Lutheran World Federation, an international relief organization.
In 2007, Rapp published her first memoir, Poster Child, with Bloomsbury, detailing her life as an amputee. She wrote, "[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."
The Still Point of the Turning World
In 2013, her book The Still Point of the Turning World was published by Penguin Press. The book shares the author's life and experiences following her son's diagnosis at nine months old with Tay-Sachs disease. The book was widely and warmly reviewed, including in The Los Angeles Times, The Boston Globe and The New York Times and was chosen by amazon.com as a Best Book of the Month for March, 2013. On March 8th, 2013 Rapp appeared on The Today Show to speak about her book, along with her many other public appearances, including a return to Fresh Air with Terry Gross on NPR.
Short Stories, Poems, and Essays
Rapp's short stories, poems, or essays have appeared in The New York Times, The Los Angeles Times, salon.com, The Sun, The Texas Observer, The Rumpus, and Body & Soul, among other publications. She has kept her own blog, "Little Seal," and she has been a regular columnist for the blog Role/Reboot.
Rapp has received many awards for her work, including recognition from The Atlantic Monthly, StoryQuarterly, The Huffington Post, TIME magazine, 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, among others.
Rapp 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. She is currently 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.
From 1989–2003 she served on various boards and committees of the Evangelical Lutheran Church in America, including the Committee on the Status of Women and the Global Mission Board of Directors.
Honors and awards
- 2004: James A. Michener Fellowship at the University of Texas-Austin.
- 2005: Philip Roth Writer-in-Residence at Bucknell University
- 2006: Rona Jaffe Foundation Writers' Award
- 2012: Rapp's essay, "Transformation and Transcendence: The Power of Female Friendship," was named "one of 25 pieces that should be required reading for women" by The Huffington Post.
- 2012: Rapp's blog, "Little Seal," was named by TIME magazine as one of the 25 best blogs in 2012.
- 2013: Named by the Los Angeles Times as one of the "Faces to Watch" 
- 2013: Rapp's second memoir, The Still Point in the Turning World, was chosen as a Best Book of the Month in March by Amazon.
- Rapp, Emily (2007). Poster Child: A Memoir, Bloomsbury USA/Macmillan, 240 pages. ISBN 978-1596912564
- Rapp, Emily (2013). The Still Point of the Turning World, Penguin Press, 272 pages. ISBN 978-1594205125
- Rapp, Emily (2007). Poster Child, Bloomsbury USA, page 11. ISBN 978-1596912564
- 1996 Fulbright Fellows at the Wayback Machine (archived March 14, 2012)
- Rapp, Emily (2011-03-29). "When is it wrong to fight for your son’s life?". Salon.com. Retrieved 2013-03-06.
- "Tay-Sachs Disease". The Jewish Federations of North America. Retrieved 2013-06-03.
- Posted on (2011-01-14). "14 | January | 2011 | Little Seal". Ourlittleseal.wordpress.com. Retrieved 2013-03-06.
- "Little Seal | Ronan's blog". Ourlittleseal.wordpress.com. Retrieved 2013-03-06.
- "Living with words". The Lutheran. Retrieved 2013-06-01.
- Rapp, Emily (2011-03-23). "Home in the World". Sfreporter.com. Retrieved 2013-03-06.
- Rousso, Harilyn. "POSTER CHILD by Emily Rapp | Kirkus". Kirkusreviews.com. Retrieved 2013-03-06.
- By Buzzy Jackson (2013-03-02). "‘The Still Point of the Turning World’ by Emily Rapp - Books". The Boston Globe. Retrieved 2013-03-06.
- Manguso, Sarah (2013-03-15). "Requiem: Emily Rapp's 'Still Point on the Turning World'". New York Times. Retrieved 2013-06-03.
- McAlpin, Heller (2013-03-15). "Emily Rapp writes her way through grief in 'Still Point of the Turning World'". The Los Angeles Times. Retrieved 2013-06-03.
- "An Amazon Best Book of the Month, March 2013". amazon.com. Retrieved 2013-07-03.
- "A grieving mom's advice to the rest of us:Love purely, and take it easy". today.com. Retrieved 2013-06-03.
- "'Still Point': A Meditation on Mothering a Dying Child". npr.org. Retrieved 2013-06-03.
- Rapp, Emily (2011-10-15). "Notes from a Dragon Mom". The New York Times. Retrieved 2013-06-03.
- "Selected Essays". emilyrapp.com. Retrieved 2013-06-03.
- "Little Seal/Ronan's Blog". wordpress.com. Retrieved 2013-06-03.
- "Archives". rolereboot.org. Retrieved 2013-06-03.
- "Yaddo Artists' Links". Yaddo.org. Retrieved 2013-03-06.
- "News and Reviews". Emily Rapp. Retrieved 2013-06-01.
- "Books and Selected Essays by Emily Rapp". Emily Rapp links. Retrieved 2013-06-01.
- "Santa Fe University Faculty". Santa Fe University. Retrieved 2013-06-01.
- "ELCA Assembly Elects Council, Board and Committee Members". Evengelical Lutheran Church of America. Retrieved 2013-06-01.
- "Speakers and Presenters". Evengelical Lutheran Church of America. Retrieved 2013-06-01.
- "MFA Profiles: Emily Rapp". utexas.edu. Retrieved 2013-06-03.
- "Philip Roth Residence". Bucknell University. Retrieved 2013-06-01.
- "The Rona Jaffe Foundation Writers’ Awards". Ronajaffefoundation.org. Retrieved 2013-03-06.
- "Best Articles 2012: The 25 Pieces That Should Be Required Reading for Women". huffingtonpost.com. 2012-11-20. Retrieved 2013-03-06.
- "25 Best Blogs 2012". time.com. 2012-10-22. Retrieved 2013-06-03.
- Kellogg, Carolyn (2012-12-28). "Faces to Watch 2013: Emily Rapp, Small Demons' Valla Vakili, more". latimes.com. Retrieved 2013-03-06.