As memoirs go, this is one of the most shattering, intense ones I’ve ever read. Given the subject matter, it could hardly be otherwise, though a lesser writer might have made it sentimental or just painful to read. When Emily Rapp’s only son Ronan was a baby, she and her husband learned that Ronan had Tay-Sachs disease, an extremely rare genetic disorder than is always fatal. They were told that over the next couple of years they could expect to see Ronan gradually lose all the developmental ground he’d gained in his first few months of life, and that he would probably die by age three (Ronan did, in fact, die just before the publication of this book).
This is tough material, and Rapp writes from right out of the middle of the experience, completing the book while Ronan’s short life continues and his disease progresses. I made several comments about the memoirs I reviewed last year to the effect that writers write better memoirs when they allow time to put distance between themselves and the experiences they’re writing about, and Rapp herself is well aware that this is generally true, and addresses it directly in the book. While it’s certainly true that she would have written differently about the experience ten years after Ronan’s death (and might yet, I suppose) there’s something about the raw immediacy of this book that’s compelling. As I said, another writer might not have made it work, but Emily Rapp does.
I noticed that in her Acknowledgements one of the fellow writers she thanks is Dani Shapiro, and that interested me because I thought about Shapiro’s Devotion when I was reading The Still Point. Devotion is the story of a mother who believed for months that she was going to lose her infant son, but who ultimately experienced the happy ending we all hope for, in life and in stories. Emily Rapp didn’t get that. Ronan’s condition was exactly what she was told it was, and she was his mother for a few brief years, knowing that it would end all too soon.
It makes for a fascinating meditation on parenthood and on unconditional love. Reading it, I was sobered to realize how much of what I think of as “parenting” has to do with investing in my children’s future, planning for it and trying to prepare them for it. Our approach to parenthood is almost completely future-oriented, even when we feel so crazy in the midst of the parenting trenches that we think we’re only living moment to moment. We’re really not: we’re nagging about homework and trying to cook balanced meals and refereeing sibling quarrels because we believe that someday our children will benefit from all that education and nutrition and discipline.
But what if they couldn’t? What if our children had no future — if all we had with them was the present moment? What would parenting look like then?
This is the question Rapp returns to over and over in this memoir — not to try to teach other parents anything about living in the moment, because most parents’ experiences are in no way comparable, and anyway Rapp (herself a disabled person, having had one foot amputated in childhood and using a prosthetic limb) vigorously rejects the idea that sick and disabled people are put on earth to be living object lessons for the healthy. She is simply telling her story; what conclusions we draw are up to us. The intensity of that story made it possible for me to overlook things that might have irritated me in a more objective writer (mainly her attitude to Christianity: Rapp is a minister’s daughter and former theology student who has since left the Christian faith, which is fine, but her scornful description of adolescent evangelical prayer groups set back-to-back against her uncritical enthusiasm for Reiki “healing” grated a little: can’t she at least see that some people have gotten as much benefit from prayers circles as she’s ever gotten from Reiki, and some people consider both to be equally hokum?). When I brushed up against moments like these I was reminded: this woman is telling her own story, a story that seared and changed her for life. Why should she be objective? She’s not, and I wouldn’t be either.
I’m not going to lie and tell you that The Still Point of the Turning World is an easy book to read, especially if you’re a parent. It’s not. But it is incredibly engrossing and rewarding.