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The Sunday Rumpus Interview: Emily Rapp

Amanda Eyre Ward — Sun, 12 May 2013 13:00:04 +0000

Editor’s Note:

This Mother’s Day, The Rumpus would like to recognize all the women who have lost their children, and the children and adults who have lost their mothers. Interestingly, these categories of existence include many of the writers whose sensibility has shaped The Rumpus’s unique flavor, from its founder Stephen Elliott to others like Cheryl Strayed, Emily Rapp, and Antonia Crane. A day of celebration for many, this Sunday can also count among the most brutal of the year for those to whom it is tinged with memories and loss.

The Sunday Rumpus has published Emily Rapp several times over the past couple of years, as she burst like a dervish into the blogging and online publishing communities, writing passionately through the pain of her son Ronan’s illness. Notably, with typical generosity of spirit, Rapp has also referred at least four writers who subsequently ended up adding their voices to our ongoing conversation. To commemorate this complex holiday, we’re honored to offer this dialogue between Rapp and her close friend from graduate school, the writer Amanda Eyre Ward. —Gina Frangello

***

When Emily’s first son, Ronan, was nine months old, he was diagnosed with Tay-Sachs disease, a rare and always-fatal degenerative disorder.

The previous sentence leaves me silent, white-knuckled. What happened next is that Emily began to write The Still Point of the Turning World, a glorious, harrowing memoir about Ronan’s life, and by extension, about her life as his mother.

Ronan died peacefully in February, surrounded by his family, his beloved stuffed animals, and the prayers of loved ones around the world. A few days after his death, I asked Emily is she wanted some busywork, and she said yes. I sent her an exhaustive list of questions, and she answered many of them below.

An aside: I stopped by Emily’s adobe home in Santa Fe, New Mexico, last December. In her sunny living room, we drank tea and talked about love, booze, and motherhood. Ronan sat in his mother’s lap quietly. His toenails were painted with glitter: “A little David Bowie,” said Emily. At one point, she said, “Amanda, do you want to hold him? He’s warm.”

I did, and he was.

***

The Rumpus: You call your memoir a love story. Why?

Emily Rapp: Although I don’t think love is quantitatively measured—in other words, I don’t believe that you “don’t know love until you have a child,” that whole thing—I do believe it is qualitatively different. In other words, it’s a more primal love, a love driven by a need to protect and nurture, and when a parent is unable to do this, the loss is gutting. And yes, it’s a love story of unconditional love. Ronan never expressed “love” in the way we’ve come to understand it, through words or actions or expressions, so in some ways, it’s a story of unrequited love, which I struggled with for a long time. If you love but the love is never known by the other person as the love you bear for them, is that love wasted? I eventually realized that this way of thinking was more about ego than anything else, and that no love is ever wasted; in fact, the most precious love is often the kind that isn’t returned, and that is given freely. And I do believe that great love brings with it the terror and possibility of great loss, and that was certainly true in the case of Ronan, who was slipping away for most of his life (in a very real sense, more than the rest of us are, although of course that’s also true), and is now gone.

Rumpus: You describe the moments after you were told Ronan’s diagnosis with great clarity. As a memoirist, how do you find your way back to the intensity of those moments? Can you do it at will, or do certain times in your life come back on certain days?

Rapp: I will never forget that day. It’s so clear to me—although “clear” might be the way my memory, that strange beast, has twisted and turned it— it feels like a war scene, or the way I’ve heard veterans describe a battle. Time slows down and speeds up, it’s a kind of “world out of time” feeling, and when you feel as though you’ve broken the time/space continuum in that way, you never forget it. It’s like a chip carved off your life, and you can examine it more objectively. My life changed forever and for good that day—a line drawn clearly on the wall, the sand, whatever—and I don’t think I’ll ever have trouble remembering it, although I’ve often wanted to forget it.

Rumpus: You were surprised to find yourself writing after Ronan’s diagnosis. Could you talk about this?

Rapp: I was a wild thing after Ronan’s diagnosis. I was scaring everyone—Ronan’s father, my parents, myself. I remember my mom sitting on the edge of my bed and saying, “Okay, its time to get up now,” and me just screaming and crying and rocking back and forth and trying to hit my head against the wall. I did not think I could live with that level of sadness in my body, and I would look at Ronan and feel like my heart was going to explode out of my chest. And I dreaded the next few years. And I felt horrible guilt. I was feeling, I think, the most extreme human emotions in one go—great love, huge sadness, helplessness, rage, panic, fear—and so of course I couldn’t sleep, or eat, or really do anything for a bit, and I honestly turned to writing because I didn’t know what else to do, and because a friend had gently suggested it.

Believe me, it’s the last thing I expected. I have been, earlier in my life, a lazy writer. I’d spend three hours at the gym to avoid writing, or I’d just find other distractions—reading, doing laundry, talking on the phone, etc. But suddenly I was like a laser beam: I was relentlessly focused, sometimes to the detriment of other things. I had what’s called hypgraphia (there’s a great book about this called The Midnight Disease), and couldn’t stop writing. That went on for almost a year, and ended with a two-week period of exhaustion, some of which I hardly remember at all. After that it calmed down a bit, but it was still very strong, and is quite strong now, although less so, as I’m coming down from the loss of Ronan, and the grief is different, more settled and deep. It is deep sadness without the panic, so I’m able (now) to sit with it more fully. I need less to do with my hands. Also, I know he’s at peace, and that his final moments were as peaceful as they could have been, given the circumstances. And just as he was liberated from this shitty illness, I am liberated by his release. It is better to be dead than be that sick. People don’t like to think about this—they romanticize, I think, this notion of life. But life at all costs is not life, it’s ego-extension. I wanted Ronan to die. His body had failed him, and his unraveling, the labor of his death, was as “easy” as it could have been. But he was ready. It was time.

Rumpus: You asked yourself, “How do you parent without a future?” What answers did you find?

Rapp: Last night, a yoga teacher of mine did a class where she talked about what Ronan had taught her about being fully present in the moment, and I think that was the task of being his parent, although obviously, if you’ve ever tried meditation, you know this is almost impossible to do. For Ronan, it was a way of life. There was no obsession or anger; just moments passing. As a result, there was no inquiry and no growth, so he gave up that part of life to be a kind of Buddha, but he was one hundred percent innocent presence, and that gives rise to interesting reactions in people, and it did so in me. He was wonderful to just be with; holding him, sleeping with him, changing him, walking with him. There was nowhere to go except where we happened to be at that moment.

Rumpus: Why do you describe yourself as a “dragon mother”?

Rapp: In some ways it was a response to the Tiger Mother phenomena, and I also felt like these parents of terminally ill children were being left out of the parenting discussion, and I wanted to give them an animal that would express the great strength and courage I learned from them in these years of Ronan’s illness. Dragons are fierce and protective and loyal, but often misunderstood, and there aren’t many cuddly dragon toys (although I have a few). I wanted to give the parents a voice, a symbol, and it also resonated with me, how huge and loud and fiery I felt, but also how easily slayed by just sitting at the edge of Ronan’s crib and letting all that anger drain away. And dragons are medieval and mysterious, much like Tay-Sachs disease itself.

Rumpus: You write, “Tragic as the situation appeared from the outside, the inside of our lives was often blissful.” Could you elaborate on this?

Rapp: Ronan was just pure joy—before he lost his faculties, he was a bubbly, sweet guy. He did funny things, like laugh when you jumped on the bed and he was lying on it. I used to drive with him to my parents’ and go to the bathroom with him on the front pack, and he thought sitting on my lap in the carrier while I was on the toilet was the most hysterical thing in the world. He loved parties; he’d go to anyone and just sit and be. So until his care became more about nursing care than childcare, it wasn’t so different from any other mother’s experience. I loved my baby, and I took him out in the world, and other people loved him, too. He was a little presence on the planet, innocent and good, and that felt blissful.

Rumpus: You write, “How could I create order from chaos and find underlying patterns of meaning in a situation that, from the outside, looked inviolate and incontrovertibly meaningless?” Did structuring The Still Point of the Turning World help you “create order” and “find underlying patterns”?

Rapp: It totally did, although I have to give Rachel Dewoskin and Tara Ison credit for the structure! I don’t know if I created order, but I did create a shadow of order, or a narrative that was traceable, meaningful, and that felt triumphant in some way. The only pattern I found was one of chaos—that chaos rules. I don’t believe in God, but I do believe in that chaotic reality, and also this: that none of us knows anything about anything. Period.

Rumpus: How do you structure a memoir? In some ways, the book is chronological, but each chapter seems organized thematically. Could you write a bit about how you created this beautiful book?

Rapp: I had good editors, smart readers, and finally, the smartest editor in New York who helped create this book. I wanted a chronological structure, but I wanted to maintain thematic elements in each so that the book was not “the story of a dying baby” but the story of all kinds of things—art, philosophy, religion, etc. So that was the idea behind that structure, which took a while to sort out, given that the original mammoth manuscript was a collection of all the essays I’d written on the blog, all of which were designed to stand alone. Like any book, I think, it was a process of rewriting, asking lots of questions, revisiting, and rewriting.

Rumpus: “For Ronan, there was no sense to be made, no change to seek out, no potential to actualize.” Could you elaborate on this?

Rapp: There is the Aristotelian teleological principle that uses the image of an acorn growing into a tree, and that life is about actualizing the growth potential present in that acorn, letting it become something else. Ronan never had a chance to “become” anything except sick, honestly. He never had a chance; from the very beginning, his brain and body were compromised, so that unraveling was kind of like Aristotle’s principle in reverse, which is terrifying, but also liberating. Think of how much we stress about living up to our “potential,” and how it creates anxiety and terror in people; in short, stops them from living their life as fully as they might out of fear and self-loathing. What a liberation to be free of that, but of course Ronan paid the ultimate cost for that freedom.

Rumpus: You write, “There are many horrible things about living with a terminally ill child, but the hardest is the way in which our parenting approach approximates an old archetypal story but without the redemptive ending.” Please elaborate.

Rapp: Ronan’s care was intense. Of course, like any child, there is childcare and work to balance and juggle, but as Ronan’s condition progressed, there were machines to master, up-all-nights with medication and suctioning and oxygen and worry. If he’d been just another sick kid, this kind of vigil and work would feel like it had a positive end goal. But it’s terrible to know that no matter how you try to help your child, his condition will worsen. In the end it was just about making him comfortable, but even that was a full-time job. And then he died. There was no final screen movie moment when he runs off into a field, healed of disease, and the parents look relieved and finally well-rested. There was only loss waiting for me and Ronan’s father at the end of a very arduous journey. Facing that day after day is a physical and emotional challenge.

Rumpus: Could you tell us about Tay-Sachs?

Rapp: It’s the shittiest disease of all time. It is a progressive neurological disorder with no treatment and no cure; essentially, the brain shuts down, and that means that the body shuts down.

Rumpus: You were tested for Tay-Sachs, and the test was negative, is this correct?

Rapp: No mutation was detected in my test, because the standard pre-natal test only tests for nine out of one hundred-plus possible mutations. Mine was not one of the nine.

Rumpus: What has the community of parents dealing with Tay-Sachs meant for you?

Rapp: It has meant everything to me. Honestly, I can’t answer it in any other way.

Rumpus: “When you’ve got a visible disability or if you’re the parent of a disabled child, I quickly learned, your story is up for grabs.” What do you mean “up for grabs”?

Rapp: It means that people forget their manners, disregard your personal boundaries, and ask you all kinds of prurient questions. It’s like being the subject of a freak show. To me, it reveals the ways in which people walk around with a normative “body standard” in their heads, and they impose that on the people they meet. We all do it; I’m not exempting myself. Part of it I think is benign—just general human curiosity, and part of it is prurient and gross, because people often use other people’s experiences of the body as mirrors for their own. Like, “Wow, I’m so glad I’m not you,” which believe it or not, people have said to my face more than once. Or, in the wake of Ronan’s diagnosis, “I would just die.” That one really made me mad. First, it’s rude; second, it’s simply not true. People wouldn’t die, but they cast it in those epic terms in order to pretend as though it won’t happen to them, which is very isolating to the person who is experiencing these terrifying earth- and heart-shattering moments. It’s cruel, and it shows the ways in which people mistake sympathy for empathy.

Rumpus: You write about growing up with a disability in your memoir, Poster Child. How was the experience of writing that memoir different from the experience of writing The Still Point of the Turning World?

Rapp: More felt at stake in the writing of Ronan’s book, and I felt I was (and am) a completely different person, a very different writer. I hemmed and hawed and bitched and moaned when I wrote my first book, and I didn’t have the time or patience or energy for any of that crap when I wrote Still Point.

Rumpus: Do you write fiction as well? How do you think writing fiction differs from writing nonfiction? In what ways are they the same? How about poetry?

Rapp: I write one poem a year, usually in January or February. I love poetry, but I find it so difficult to write well. I do write fiction, and I find it more difficult, but also more liberating. On the one hand, you can make up the story, but you have to make up the story. Nonfiction ties your hands a bit, and just like writing poetry in rhyme, it can force you to make more brutal decisions in terms of word choice, plot, etc.

Rumpus: What do you make of the attempts to become “healed” or “whole”?

Rapp: I don’t think we get there—I think these are false terms, much like “transformation” and “redemption,” which are presented as simple concepts but are actually quite complex and hard to pin down. I think it’s more important to concentrate on trying to be, simply, happy. Once you’ve known deep despair, you feel even more motivated to be as happy as possible. That’s how I feel.

Rumpus: So many strangers know about Ronan. How can they, and those that know you, help? What should someone say to a mother who has lost her child?

Rapp: Say, “That sucks.” Don’t say, “I can’t imagine,” because of course the horror is that everyone can, but to say so feels isolating and cruel.

Rumpus: Why do you call Ronan “the little seal”?

Rapp: His name means little seal in Irish.

Rumpus: What is your favorite book?

Rapp: War and Peace.

Rumpus: What was Ronan’s favorite book?

Rapp: Fishy Tales.

Rumpus: What were Ronan’s favorite stuffed animals?

Rapp: His dragon toy, his stuffed seals, and his stuffed badger. He also liked his stuffed turkey and a small bunny from my friend Julia.

Rumpus: What is on Ronan’s “magic shelf”?

Rapp: Crystals from friends, ornaments, a statue of Ganesh, a little goat statue, small glass seals, rocks from Cape Cod, a few reiki rocks, a postcard from a cathedral in Zurich, and many religious-ish objects from Chimayo in New Mexico.

Rumpus: I know Ronan loved swimming and loud wrapping paper. What else?

Rapp: He loved food, especially cheesecake. He loved to be carried and to be outside, and he loved gospel and jazz music. He loved parties!

Rumpus: What did Ronan smell like?

Rapp: Rice and shampoo. Sleep.

Rumpus: I know what it felt like for me to hold Ronan. What did it feel like for you?

Rapp: It felt like holding the world.

Rumpus: Ronan had the most amazing eyelashes. What other physical attributes of your son brought you joy?

Rapp: I loved his nose, and the green-gold-brown color of his eyes. I also liked the red mark between his eyes, and his tiny hands. I loved the way his hair got curly and wild after a bath and when it was humid. And I loved his big teeth.

Rumpus: What was your favorite hike with Ronan?

Rapp: The Borrego Trail in Santa Fe, because I could still have on the front pack until he was nearly two.

Rumpus: What was it like the night that Ronan died?

Rapp: It was bitter cold, and he was with me, my boyfriend, and my parents. It was as peaceful as death can be, I think, in light of the fact that both birth and death involve a kind of labor, a kind of unraveling. I was glad I got to see his tiny body at peace after it had been through so much.

The Sunday Rumpus Essay: Getting Made (in honor of Ronan Louis and Emily Rapp)

Jennifer Pastiloff — Sun, 17 Feb 2013 14:00:34 +0000

This time a year ago I was leaving Mexico.

I was on a boat. I was on a boat leaving Mexico and if I knew that it was the last time I would be seeing my friend Steve Bridges I would’ve asked the boat to turn around and I would have gone back and back and back farther. All the way if I could where nothing was blinding and everything was dark and still in the way things are right before they go bad.

A year ago I sat on a plane, like I am as I write this, and I ordered a glass of wine as I looked through my photos of the retreat and I laughed at the videos of Steve and thought How I love this man. How I love this man.

A year ago I came back from Mexico and laid on my sofa feeling pancake flat and Steve texted me I am laying on my friend’s couch and I can’t stop thinking about our trip. I wish we were back there. Wow. I wrote back me too and in my pancake way I stood up and put on shoes to go teach my yoga class but I knew something had shifted, something was gone, and maybe that was why I felt flat or maybe it was natural after a trip like that to feel so much I want to be back. To feel it so much in your bones that they won’t even carry you. They turn you into a pancake. Pancake yoga teacher. Nothing. Flat. Pancake person.

When he died, I texted him I want to be back. I want to be back even though I knew he was dead.

We made videos the night before we left Mexico. Like little time bombs with messages on them that we planned to watch in a year’s time. When it was Steve’s turn he looked into the camera and said, That was fun. Let’s do it again next year. Hell, let’s do it again next month.

He died within the month.

This morning I got the text that I had been waiting for, the one I knew would come today or tomorrow or yesterday. Ronan died. One of my best friends, the beloved writer Emily Rapp, lost her two year old son this morning as I zipped up my suitcase to head for the airport for my Hawaii yoga retreat. His suffering is over she wrote. His short and remarkable life she wrote. I am numb she texted me privately.

I am numb too. I am on a flight to Maui and I feel nothing. I am hungry. I am not hungry. I am sad. Am I sad? I feel nothing. Where does the pain go? It’s floating up here on the airplane and I am sure will make its way up to my seat if we don’t crash. What happened? How does a mind process this? (I will have the cheese omelette and not the cereal, please.) Ronan died and it’s for the best say the very best intentioned platitudes. My friend Robert held him for an hour yesterday. I asked him what it was like. Everything, he said. It was everything.

What’s it like to hold a dying baby for one hour? One hour in a short life is like ten years in a normal life span. (What is a normal life span?) What’s it like to hold a dying baby for ten years? He got to feel his last little oomphs right there in his arms (imagine that!) and hold his small fingers (maybe he intertwined them in his own?). He got to brush a few hairs from his eyes and pass him back to his grandparents or his mom and he got to feel a life right there in his arms which would disappear in less than 24 hours into That’s it and It’s over but he got to hold that and stop time for ten years because in a dying baby’s life one hour is equal to ten years. He got to do that and I am glad for that. I love him for that. For being there for Emily and Ronan when I couldn’t.

It makes you want to stop lying.

Why lie when this can happen? When a person can be born and then just like that It’s Over, It’s done. He’s gone.

Why tell untruths as if people care?

I keep having this recurring dream where I am driving and the brakes don’t work. The other night I had it again. I was driving in Philadelphia, over the Benjamin Franklin bridge. The brakes wouldn’t work. I tried pressing my foot into the brake and it only accelerated the car which wasn’t even my car. I swerved in and out of lanes so I wouldn’t hit anyone. It was all my untruths rushing at me. In the dream I somehow made it to safety and pulled out a paper where I had put a big X through a box that said “Brakes.”

I had shut them off myself.

The greatest lie that was ever told was that you are safe. It’s the lie I still want someone to tell me though. (Say it to me?)

Say it to me.

Other lies have been both monumental and petty but with the news of a baby’s death comes a yearning for honesty. There is nothing else. I love you to all the people I love. I don’t care to all the things I don’t care about, and there are as many as the things I do care about. I am happy. I am not happy. All of it. Truths and lies and some half and half.

Once, on a road trip, there was this deer along Route 70, just outside Cody, Wyoming. His eyes the color of headlights. He recognized me immediately. (He was no stranger to regret and he spotted mine immediately ). And with his four-chambered stomach and eyes on the sides of his head, I knew his type too. The cautious, the time-takers, the digesters.

Unlike him: I am impulsive as a flood.

But we knew each other, me and that deer. For the ten years or two seconds he stood there in the road in front of our car.

A basic law of the universe: the implications of what’s been said always mean more than what actually has been said. My deer understood this algebra, this economy of language and therefore didn’t say much. Me: I spit it out as I feel it when and if I feel it. Unlike my deer, I do not contemplate my cud.

I love you!

The lies I have told have mainly been to myself but others have been to save face.

There is no more of that. Do you get what I am saying? It doesn’t matter what anyone thinks because once you have held Ronan in your arms for ten years or one hour you see that what is important is the life we make, right here and now. You may not have been the one holding him in your arms for ten years but you get the metaphor, you get the as if. You can almost smell Ronan in his baby and old man smell. The life you make here and now. Not the lies or the I dropped out of college because I was half dead and freezing but I will lie about it so you don’t judge me because no one cares. It does not matter. It’s the life you make here and now because after you get the text that he dies you realize that all you ever had were the moments of holding him, the minutes with Steve in Mexico, the half-seconds with people you love. I don’t know how fast it feels at the end, but my guess is that it feels like ten years. Or maybe 6 months. Maybe less or more. But it won’t feel like much. It will feel like all you had were breaths and moments and a few snapshots with the sun in your eyes like that. You will squint to remember the way the light felt in your eyes, to recreate that and everything else that was blinding and bright and yours.

I love you. The words alive like velvet antlers. Words made of bone. They need a way out! I must speak them. I must tell no more lies. The life that you make here and now. Here and now.

Words: make, here, now, love. Remember them.

The old deer had made it through once more, one more near miss across an ocean of cars, a scuffle of rain, and a sky full of mistakes. He’d found a pair of eyes (mine!) to lock into before going back into the world, alone and foraging.

It makes you want to stop lying, to climb onto the wing of the plane and hang there if you knew you could and sob and swing and fall into clouds like you would if you were a cartoon and could always be safe in a cartoon world. You could sleep on a nimbus cloud and wake up and ten years will be ten years rather than an hour. It makes you want to stop lying and run into the arms of all your beloveds (you’re lucky if you have even a handful) and tell them to keep you there. Hang on to me, tight like this. Tight like this. Keep me here. It makes you want to admit that lying is worthless and dirty and that nothing matters, not really anyway, so might as well buck up and say I love you or I don’t love you or I am so broken or I wish you didn’t die or Yeah, I get that your spirit is with me forever but God damn it I want your body. Forget the spirit! I will trade it for your body and smell and fingers. It makes you want to forget everything and remember everything with equal measure. It makes you want to cry for days and beg the gods or the scientists or luck to leave you alone and leave everyone alone that you love. It makes you want to live like you were meant to all along even in the moments of self-hatred. It makes you all these things.

It makes you.

Condolences

Brian Spears — Fri, 15 Feb 2013 18:43:29 +0000

It was with great sadness that we heard the news this morning of the passing of Emily Rapp’s son Ronan. Ronan suffered from Tay-Sachs, a genetic disease caused by the absence of a vital enzyme called Hex-A, which causes cells to become damaged, resulting in progressive neurological disorders. Rapp’s most recent book (and our Rumpus Book Club selection for this month), The Still Point of the Turning World, takes the reader through this experience, through what Cheryl Strayed described as “the way a woman loves a boy who will soon die.”

Emily has been a part of The Rumpus for a while now, having written for us three times over the last year, and we share her loss.

Emily Rapp posted the following on her Facebook page this morning: “In lieu of flowers or cards, please make a donation to the NTSAD – www.ntsad.org — in honor of Ronan as well as all the other children and their parents who have suffered from and continue to live with this disease. Thanks.”

We send you all our love, Emily.

The Rumpus.net » Tay-Sachs

The Sunday Rumpus Interview: Emily Rapp

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The Sunday Rumpus Essay: Getting Made (in honor of Ronan Louis and Emily Rapp)

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