Emily Rapp, a Fulbright scholar and Harvard Divinity graduate, has written a memoir journaling her love for her son, Ronan, who died of Tay-Sachs disease. This private emotional and philosophical journey is a true story about parenting a dying child in a culture that is inherently uncomfortable with death and illness, and the book itself a vitally important read for anyone with a fear of death or desire to make themselves useful to families facing tragic situations.
THE STILL POINT OF THE TURNING WORLD begins with penetrating honesty and high emotions but quickly evolves into something enlightening, purely intellectual, and profoundly freeing (and not only for those who have had a similar experience, but for anyone capable of witnessing a journey of difficult truths and coming away with deeper understandings). Rapp begins by telling of Ronan’s diagnosis in his infancy, how she and her husband reacted to this nightmare, what they thought and felt, how they managed to cope (and didn’t), and how their parenting focuses and beliefs about life itself evolved over time and with clear perspective.
"THE STILL POINT OF THE TURNING WORLD is a staggering, unforgettable memoir about a family that learns, in the face of death, to hold nothing back, whose experiences offer others a profound learning opportunity."
Rapp speeds through several years sharing bits and pieces of her family’s experiences, her own thoughts and feelings illuminated by the simple process of caring for Ronan and loving him each day. While Rapp lived her life and helped Ronan live his, she discovered truths and comforts in different philosophies and approaches, particularly Buddhism, and also publications of many great writers such as Mary Shelley, C. S. Lewis and Sylvia Plath. But the greatest ideas expressed in the book are really her own, forged from life experience.
One of the most interesting and cringing aspects of reading this memoir was getting the opportunity to hear the hurtful things people say to families in grief, usually unwittingly, though many are obviously terrible, thoughtless things to say. But readers may be surprised at some of the seemingly harmless things that come out of people’s mouths that are meant to be positive, except they are ill-considered when you’ve never experienced the same kind of loss. Readers should buy the book to gather insights on what to say and what not to say.
A sample: “What’s wrong with your baby?” “How can you drag that child all around town when he looks so tired?” “I hope you got sterilized.” “Why didn’t you get tested if you knew it was genetic?” “I didn’t know you were Jewish.” “Oh, I don’t really like parenting.” “Let God be the judge.” “Things happen for a reason.” “If you believe in yourself, you can do anything.” In expressing her frustrations with people, Rapp is quite forgiving but also direct, and reports that it is a rare and relieving thing when a few people (and this was very rare indeed) could hear the news of what was going to happen to Ronan and not react. She experienced immense relief whenever friends would simply ask how they were doing, or to face their situation without putting their own feelings on a family that was already grieving.
Rapp describes quickly learning to stay away from people who couldn’t tolerate her son’s diagnosis and openly avoiding parents with children the same age as Ronan who seemed to be absolutely future-oriented. She instead found herself seeking out those who were absolute in their own comfort with death, and offers herself up as an analogy linked to a myth, calling herself the “dragon mom” based on an old cartography phrase “here be dragons,” which was historically created by mapmakers in order to mark unknown territory that people should fear and think of as dangerous. Rapp’s perspectives on this are wonderful and really deserve thoughtful consideration. She is an extraordinary writer who also comes off as a lovely, genuine person.
THE STILL POINT OF THE TURNING WORLD is a staggering, unforgettable memoir about a family that learns, in the face of death, to hold nothing back, whose experiences offer others a profound learning opportunity. One of the key messages here is that no life or tragedy amounts to simple despair, that everyone is important for their own value, and that lives matter even if they areshort-lived, limited in function, or difficult for others to face. Rapp’s perspectives on our success-obsessed society also suggest that real understanding of personal priorities is closely tied to one’s own understanding of loss. Her visions will help all readers understand how facing death will prepare one to live life to the fullest.
Reviewed by Melanie Smith on March 8, 2013