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.)