Emily Rapp (c) Anne Staveley

A few months ago, I received a galley in the mail with a note from a lovely editor I’d had lunch with a few years ago. Andrea Walker said that she loved this book dearly and thought I would too. That galley was Emily Rapp’s memoir The Still Point of The Turning World. Here’s how the publisher described Emily’s book:

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.

Andrea’s impulse to send the book to me was a good one. Here’s an excerpt from the email I sent Emily, whom I’ve never met, minutes after finishing her book:

I just finished your book and am feeling totally electrified. WOWEE. You- and it- are simply extraordinary- I am humming and radiating with, shaken and transported by the fierce energy and lambent brilliance of you and your writing. And what a kindred spirit you are . . . Please know that you have rocked my world, blown my mind, broken open my heart, and performed every other cliche of wowing you can think of on this receptive and grateful reader.

with the utmost admiration and in solidarity,
Priscilla

The Still Point of the Turning World now sits on my “favorite books of all time” shelf and I channeled my feelings about and reactions to it into a series of questions I emailed Emily. Below you’ll find our conversation about parenting, literature, disability, grief, illness, marriage and divorce, religion, quotations, gratitude, resilience, and joy.

1) One of the most striking arguments of your book is your claim that joy resides within sorrow- that there can be a special intensity and numinous quality to the experiences of loss and grief:

“Tucked inside the moments of this great sadness — this feeling of being punctured, scrambling and stricken — were also moments of the brightest, most swollen and logic-shattering happiness I’ve ever experienced

This sentence perfectly describes my experience with my terminally ill mother-in-law and my terminally ill father, both of whom died too soon of cancer. In fact, if I ever write a book about losing those beloved parental figures, I would quote this line from you! What are some of the brightest, most expansive and luminous moments you experienced even as you were enveloped in the great sadness of Ronan’s physical decline and impending death?

I loved being outside with Ronan — he was a little guy, so I could walk with him in the front pack on trails around Santa Fe until he was nearly two years old. I loved watching the light in his hair, in his eyes, and sometimes, when we were in the stroller or walking, he would sigh and coo, and you could tell he was enjoying the wind on his face, or a smell dusted up in the wind. I loved that. I liked sleeping with him, too — having him close, holding his hand while we watched Law and Order at night (true story!), and all the snuggling. He was a sweet, adorable baby with a wonderful presence. Everyone who met him felt it. Sometimes I would see toddlers having a tantrum and I’d think, “well, no terrible twos for Ronan!” in a kind of darkly humorous way. I also have great memories of traveling with him in the back of the car while I drove to my parents’ house in Wyoming. When I stopped to get gas or food, I’d take him out and carry him in the front pack, and for some reason, whenever we walked into a gas station, he giggled. Thought it was the funniest thing in the world. Later, as he became more withdrawn, it was just the quiet moments of holding his little body.

2) At one point, you write of your realizations about the relationship between love and loss, happiness and risk: “I realized you could not have one without the other, that this great capacity to love and be happy can only be experienced with this great risk of having happiness taken from you — to tremble, always on the edge of loss.” How can one hold onto the positives of the kind of awareness your book seeks to cultivate in us- gratitude, living in the moment, knowing what matters- without being overcome by the negatives- anxiety, fear, existential despair? How can we hold onto a sense of possibility and optimism when confronted with the reality of our extreme vulnerability? How, to use your turn of phrase, can one tremble in the sense of vibrate or quiver or shake with intense awareness and appreciation and love rather than shudder or quake with terror on the edge or in the face of loss?

I don’t have an easy answer for this, but I do think an acknowledgment of the precariousness of life can be liberating. The flip side, of course, is terror, but I think it makes you notice the world around you in a more specific and deliberate way. It makes you think, wonder, risk. For me, it made me change almost every aspect of my life, which was difficult but necessary. And I don’t think you can ALWAYS be so “hey, being at risk is liberating.” I think, in the management of any duality, you are going to have freak out moments. I think that’s the point, in fact, to understand that the cultivation of gratitude and optimism and peace is going to be punctured occasionally with panic, terror, etc. That IS the human condition. What’s different about holding the duality in this way is that eliminates the myth that we can control much about our lives. And that’s something worth revisiting on an hourly basis, or every minute, if you can. It changes your outlook, or it changed mine, and it made me much more fearless in almost every respect — artistically, personally, psychologically.


3) The first sentence of your book- “This is a love story, which, like all great love stories, is ultimately a story of loss”- struck a deep chord in me. My literary memoir of motherhood, The Anti-Romantic Child, told the story of my experience parenting a child with autism via the poetry of William Wordsworth, who is both the great poet of childhood and the great poet of loss: he is the poet who declares that “nothing can bring back the hour / Of splendour in the grass, of glory in the flower.” Yours is a story of love and of great loss, but it is also a Wordsworthian story of finding “strength in what remains behind.” Where did you find strength in the face of loss? And what remains behind?

I loved Ronan, and I loved being his mother. I know that you can relate to this as a mother of a special needs child — if people knew the reality, they wouldn’t say condescending things about our children being “special” or “gifts from God,” they would just say that they are PEOPLE. That helped me. And loving Ronan, and the love of my friends and later, near the end of his life, the love of my new partner, gave me strength, even though I often felt helpless and of course, horrible sometimes at the very primary task of protecting Ronan from harm. I made a conscious (and to some, I think, a somewhat controversial decision), to build a life that I could climb into when Ronan was gone. I think many mothers struggle with this, as it’s an issue of identity — I’m a mother, but I’m also a person with other pursuits. I didn’t have the option of quitting work to throw myself on any funeral pyres. I had to make a living, keep my health insurance, and also have a hook in a world post-Ronan so that when I died I would want to go on living. So what remains is a sad and beautiful life, a rich, full life that is full of both grace and terror — in short, the life I was living before WITH Ronan, only now his suffering has ended. Life with Ronan was never a tragic horror full of every-moment despair. It was like any life — with ups and downs, confusions and triumphs, terror and glory.

4) Another point of connection between our books is the way we use, refer to, rely on literature to make sense of the parenting and life challenges we were faced with. Your book is not only an ardent celebration of Ronan’s beauty, truth, value, it is also a tribute to literature and a testament to its explanatory, consolatory power. The books and poems and authors you read and refer to are eclectic: Marilynne Robinson’s Gilead, Mary Shelley’s Frankenstein, Myths from Mesopotamia, the poetry of Louise Gluck, Sylvia Plath, Emily Dickinson, and your good friend Phil Pardi. What are some of your favorite books and poems and who are some of your favorite authors that you didn’t mention in The Still Point of the Turning World?

Yes, yay literature! I love that you do that in your book as well. I love Jane Kenyon’s poetry, and found that incredibly comforting, and also the poem “Wild Iris” by Louise Gluck with that opening line “at the end of my suffering there was a door.” Karen Armstrong’s work on myth figures prominently in the book as well, and there were individual poems (that were epigraphs – I LOVE epigraphs) that didn’t make it into the final book — poems by Denise Duhamel, whose poetry books were at an artist’s residency I attended in Spain. I read her entire canon in one night. Margaret Atwood, Frances Sherwood, even Tolstoy, Michael Ondaatje — all of my old favorites came back to haunt me in the best ways when I was working on this book.

5) Like me, you are a quotation nut, and I especially loved this aspect of your book: the epigraphs (I adore epigraphs!), the excerpts and lines braided into your own prose, the poetry that often pops into your head as you’re going through experiences with Ronan (at one point you say it was “as if the ghost of Emily Dickinson were speaking directly into my ear”). The ghosts of dead poets speak directly into my ear all the time! 🙂 If you could use one literary passage or poetic excerpt to summarize your experience as Ronan’s mother, what would it be?

Ha! I am SUCH a quotation nut. My students tease me by recommending that I write a book called “Emily’s Epigraphs.” I would say this line from Pablo Neruda: “I don’t have enough time to celebrate your hair.” Time was the enemy, in Ronan’s case, as it is for all of us, but the sense of that was escalated in my experience with him.


6) Speaking of quotations, the title of your book is a phrase from T.S. Eliot’s Four Quartets. How did you settle on this as the title of your memoir? Did you consider other titles? What did you hope to evoke with this phrase? I’m working on a project about stillness, so I’m especially interested in your answer!

My original title was Dear Dr. Frankenstein, because I liked the implication of the grotesque and the beautiful, both of which are held in beautiful tension in Shelley’s book. In the end, though, it was a concern that many people confuse the Doctor (the actual Frankenstein) with the monster, who is never named. All those bad black and white movies have confused things! In any case, I talked with my editor and my agent and the publisher, and we agreed that a sense of stillness was the one thing that permeated this book from start to finish. This is why conversations around theme and purpose are important for authors to have with other people, because it’s difficult to have that perspective on your own work. I’m very happy with the title.

7) In the book’s opening pages, you emphasize the utter grimness of Ronan’s prognosis: there is “no treatment and no cure”‘ for Tay-Sachs and there is no possibility of progress for Ronan. Although my own son has made considerable progress since being diagnosed with a type of high-functioning autism called hyperlexia at age 3, in my talks and visits to schools, I encounter many parents whose children will never speak, certainly never go to college, live independently, marry, or have children. What would you say to parents whose children will never “make progress” or family members of people with a terminal diagnosis?

I would say, “that totally sucks, how do you feel or what is it like for you, or what I can do to help? or I’ll be thinking about you,” or just, especially in the case of a child, “tell me what he or she is like.” People are people. We don’t have to rocket into some weird sense of other people’s notions of potential. We don’t have to be “slotted” anywhere or categorized in any specific way to matter in this world. That’s why I think stories are important – – telling stories makes the actors and players MATTER, and all of us matter, no matter how long we live, and no matter what we look like or what we DO with ourselves. Period. In both of these cases, the time for bromides and magical thinking is officially OVER, at least it was for me. I can’t claim to speak for everyone facing these situations, but I know that in talking with others that people feel the way that I do. Honesty, please, and a recognition that there is NO normative experience whatsoever.

8) Even though the consensus on Tay-Sachs is that “there was nothing to do” and even though you had no conventional goals to set for your child or your parenting, no typical milestones to shoot for , you did have high aspirations for your parenting and you did succeed in doing so much! You made Ronan’s life playful, peaceful, characterized by “dignity and minimal discomfort,” and your efforts reminded me so much of what my extraordinary stepmother did for my father when four years after his diagnosis of terminal lung cancer, he began to “gradually regress into a vegetative state.” For the last two years of his life he did not speak, was fed through tubes, and breathed with the help of a tracheotomy and tubes suctioning his lungs. “Determined to make each remaining moment of his life one touched by love,” my stepmother did for him what you did for Ronan- she cared for him at home with the help of nurses (Japanese insurance is excellent), she covered him with colorful blankets knitted by his mother as gifts to her grandchildren, surrounded him with photos of his children and grandchildren, his son’s paintings, plants, flowers, and stuffed animals, she read to him and sang to him and talked to him. Can you tell those readers who may not have followed you on your blog what you did for Ronan to make him comfortable, to bring him pleasure and fun and elation and transport? (I’m thinking of the stuffed animals, the harp, the therapeutic work, the friends cuddling him, the walks etc). What can your experience show others about how to make a seemingly intolerable situation not only tolerable but positively beautiful?

What a beautiful story of your father and stepmother. Ronan had a magic shelf, a place where visitors would place objects that mattered to him. He had a sweet little room and a comfortable bed. He had a million soft blankets and soft toys. He had a gigantic stuffed sheep that he liked to sleep and lie in. He went outside a LOT and he was held by many, many people. He went to parties. He heard music. He had a physical therapist and an acupuncturist. He was held by so many people. People talked to him, said his name. He watched the recent Obama election stretched out and snoring across the laps of my two friends Amy and Nouf. And he LOVED to eat — cheesecake was his favorite.

9) As the parent of two children with special needs (my younger son has dyslexia and dysgraphia, my older son has autism), I am especially interested in the points you make about normalcy and difference. How did your experience of your own disability affect the way you cared for Ronan? How did you like others to approach you and him?

As you know, there is no normative experience, no normative embodiment, although we are pressured to think that there is. We are, all of us, going to be disabled at some point in our lives, and we are all going to die. I think some of the preoccupations I had about my own body (hating it, wishing it to be different, etc.) disappeared gradually (and I hope forever, although they occasionally rear up) in caring for Ronan. He was beautiful and perfect IN HIS WAY. This was a huge lesson for me, although one I would have preferred to learn in just about any other way, obviously. I liked people to walk up to him, say his name, say hello, and take his hand. To treat him like a person, not a sick baby. My biggest peeve about my own disability is when people say “I’m sorry,” as if my artificial leg completely defines my life in a negative way. Disability truly lacks a frame in this country. Now, in a strange twist of fate, I find myself being mistaken for a war veteran, since now women are going to war and losing their limbs. Strange. I wanted Ronan out in the world, even if he occasionally made people uncomfortable, because my parents hauled me everywhere with my wooden leg as a kid. And I’m grateful for that.

10) I often tell people that an upside to being a special needs parent is the wealth of extraordinary people we encounter in our journeys with our vulnerable children, who need so much help, support, and special care in order to do things most children do effortlessly, whether it be feeding themselves, or being able to breathe at all. Can you share some anecdotes about the therapists, babysitters, doctors, and other caregivers who helped you and Ronan navigate the terrain of his illness?

We had a babysitter who was training as a nurse, Ashleigh, who was also a jazz singer. She sang to him. Elana, our occupational therapist, would sit with Ronan and massage him and sing to him and make him comfortable. Dawn and Janet gave him acupuncture treatments at home and in the office. Our hospice nurses, Liz and Cynthia, were amazing, from first to last, they were there with in-the-moment advice about how to practice comfort care and make Ronan’s quality of life as positive as possible.

11) What do you think health care providers can learn from your and Ronan’s experience? How can we as individuals and as a country and culture make what the writer Katrina Kenison has called “the bustling, overpopulated country of illness [and] affliction” a less harried and sterile, more humane and compassionate place?

I think we need to have real discussion about quality of life. I think the medical community has too long been trained to think “prolong and save,” without a real understanding of what that might mean for the person being “saved.” I think hospice needs more airtime in the health debate — we talk constantly about how to be healthy, but we don’t talk about how to die. It’s such a taboo in the culture, and I truly believe that needs to change. People — and children — are dying all over this country, they need care and compassion, and they are very rarely a part of the health care debate unless it’s pitched as a “tragic” story. It’s the story of life; we need to face it and figure out how to help people spend their last moments in dignity and peace, as much as that’s possible.

12) As the daughter of a writer who wrote an acclaimed memoir about his conversion to Catholicism from Judaism and subsequent falling away from the Catholic church and as a writer who despite being not conventionally religious draws inspiration from religious authors like Henri Nouwen, Abraham Joshua Heschel, and Frederick Buechner (and like you a passionate admirer of Marilynne Robinson’s Gilead), I was fascinated by the role that religion and spirituality have played in your life and in your writing. What was it like growing up as the daughter of a pastor? Why did you go to divinity school? How and why did you begin to doubt some of the conventional pieties? How did your divinity school training help you through this experience with Ronan? How has literature provided a kind of secular and idiosyncratic scripture that replaced the more traditional scriptures you were raised on and studied?

I also love Heschel, and sometime I’ll tell you about my flirtation with conversion to Judaism. I almost did it! But then did not (again, long story). Growing up in a religious household was fun, in fact. The church I grew up in was a community of immigrants, people of all different ages and vocational pursuits and political affiliations. What united us was story — the great Christian story, of course (which I don’t believe, but was taught nonetheless, the promise of salvation through faith); also, the stories in the Bible are the precursors to modern stories — they’re about love and loss, about sacrifice and unfairness, about living and dying. I loved to read, and I loved to read the Bible (yep), because the stories seemed relevant to human experience in a direct and immediate way. Although I’m not religious, you can learn a lot about plot and dialogue from a New Testament story. I went to divinity school because I had been a religion major, and I did and still do relish the intellectual study of these religious stories. My divinity school training wiped away any faith or piety, but it gave me an appreciation for grappling with questions involving the meaning of life, the pursuit of happiness, all of that, and so those old books became a great resource for me during Ronan’s illness. I still like to read philosophy of religion and other theological works, so I suppose literature and theology have an equal standing for me in terms of inspiration and as a source of intellectual interest.

13) Do you want to have more children one day?

I do!

14) Your marriage fell apart in the wake of the discovery of Ronan’s fatal condition as mine did in the aftermath of our grappling with our son’s autism. I so identified with this moment in your book: “With Rick . . I felt as if I were shouting through a tidal wave of water and fire to connect with him, or trying to have a conversation in the middle of a tornado. You have to stick together, our friends and family told us. How, when we could hardly hear each other?” Our families and friends told us exactly the same thing, and yet eventually they came to see that we could be better parents and people apart. Can you speak to the special challenges facing parents of children with special needs or chronic illnesses and also to the benefits of separation and divorce if couples are not able to hear each other anymore?

I think it’s an issue of grief, and its many permutations and manifestations. When you’re grieving — really grieving intensely — it feels like that is the ONLY way to grieve, and it’s hard to imagine anyone choosing a different path. I think it goes one of two ways: you either become closely bonded by the struggle and the experience, or you grow apart. And I don’t think there’s any way to predict how that will go, and I don’t think it’s an issue of two people not “trying” hard enough or being weak or bad people. Grief is annihilating, and we do what we have to do to survive it; everyone is going to manifest that pain in different ways. Rick was an amazing father, and I think we did a great job as co-parents of Ronan. But I think this idea that you MUST stick together just adds another level of pain and guilt to an already difficult situation. Issues and problems are never so clear cut, and neither are the solutions.

15) One of my favorite lines from your book is: “Ronan taught me that children do not exist to honor their parents . . . their parents exist to honor them.” So then the question becomes: how can we best honor our children? How can we shift our focus and our efforts from changing, fixing, and improving our children to accepting, celebrating, and honoring them?

Children are people, not projects. I believe this. If I ever have the opportunity to be a mother again, I’m going to let my kid be whatever he or she wants to be, even if I don’t agree, or it seems strange to me. I think the challenge for parents should be this and only this: how can I create an environment where the unique nature of my child is honored and supported and nurtured. This means that it doesn’t matter what other people are doing, other kids, but only what feels good and healthy to your child. No one-upmanship. No pressure to be better or smarter than this or that other kid. No rankings, no charts.

16) What one piece of advice would you give every new parent? And what one book or poem would you recommend that every parent read?

I would say enjoy every moment because you never know what will happen in the future. I would hand them a copy of A Grief Observed, by CS Lewis, although I doubt new parents would want to read it! And also Pablo Neruda’s beautiful love sonnets, because it’s such a pure and specific analysis of love, applicable to many different kinds of relationships.

17) What is the first word that springs to your mind to describe your son?

Beautiful. Soft.

18) How would you like Ronan to be remembered?

As a sweet, darling, beautiful, perfectly made boy who was loved from the moment of his birth until his final moment, and is still loved and remembered.

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Emily Rapp was born in Nebraska and grew up in Wyoming and Colorado. Born with a congenital defect, her left foot was amputated at age four, and she has worn a prosthetic limb ever since. A former Fulbright scholarship recipient, she was educated at Harvard University, Saint Olaf College, Trinity College-Dublin, and the University of Texas at Austin, where she was a James A. Michener Fellow. Emily has taught writing in the MFA program at Antioch University, Los Angeles, The Taos Writers’ Workshop, University of California – Palm Desert, and the Gotham Writers’ Workshops. She is currently professor of Creative Writing and Literature at the Santa Fe University of Art & Design in Santa Fe, New Mexico. She is the author of two memoirs, Poster Child (Bloomsbury, 2006), and The Still Point of the Turning World (Penguin Press, 2013).