Emily Rapp

Emily Rapp
Santa Fe, New Mexico, USA
July 12
Emily Rapp is the author of Poster Child: A Memoir, and The Still Point of the Turning World, which is forthcoming from Penguin Press in March 2013. She is also the author of many essays and stories in the New York Times, the Los Angeles Times, Bellevue Literary Review, The Sun, Body + Soul, StoryQuarterly, The Texas Observer, and other publications. She is currently Professor of Creative Writing at the Santa Fe University of Art and Design in Santa Fe, New Mexico and a faculty member with the University of California-Riverside Palm Desert MFA Program.


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MARCH 10, 2011 8:48AM

The Myth of Meaning: Parenting a Terminally Ill Baby

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Today I felt like I was living in an alternate universe – one straight out of Tolkien. We began our day as usual (though that phrase has little meaning for me anymore), with the three of us in bed. Ronan had a bottle and grabbed our noses and giggled. We cried. First Rick, then me, then Rick again, then me again. We talked about taking Ronan for hikes again when the weather gets warm. I’m teaching in Taos in July, so we’ll take him there. I’ve been offered a June writing residency in Spain (not that I care, although Rick reminds me that I need to keep thinking about my future, my career, etc. and blah), and we talked about trying to make it possible for all three of us to go. We like the idea of Ronan on a bright beach, feeling the soft sand between his fat little fingers and toes, feeling the unique Mediterranean breeze – thick and sweet and perpetually summer-warm – on his face.

We did a crossword puzzle, but weren’t able to fill in all the blanks. I forced myself to eat, and I forced myself to go out, even though my stomach is in some kind of elaborate knot, and even though being in the world feels like being flogged. Kids and babies everywhere; preschools and grade schools and parks with jungle gyms; buggies and baby stores and pro-life billboards. I had to pull over three times to get it together enough to stay on the road. I told C about Ronan when I saw her, and of course she was wonderful. I’m so amazed at our “new” friends here in Santa Fe. R is always calling me and telling me not to isolate. L is inviting me for walks. N is researching elliptical trainers we might buy for the back room so that we can cancel our gym memberships but still feel like humans and get some exercise. I am grateful. But when I tell people what’s happening in our little world on Sol y Luz Street, I feel this great divide – between myself and other people, and also within myself. It’s like this: as I’m telling the person that my son will die (I refuse to sugarcoat), as those words are leaving my mouth, I’m conscious of the fact that there was a “me” before I knew Ronan was sick and a “me” that now anticipates his death, and these two people don’t know each other at all, and so I no longer know how to relate to the person before me, even if it’s someone I respect or adore or even love. I feel like I’m standing in front of Tolkien’s Fires of Mordor, sparks licking the back of my head, some nasty, rotten-mouthed Orcs scaling the lava-slicked mountainside and heading in my direction: in short, an image of hell. And as I look at my friend I imagine a beach in Southern California, maybe Zuma Beach in Malibu, with some gorgeous, blue-tinged waves, the sun setting in an orange and red blaze on the Pacific, a few bluffs to add some shadow and interest. It looks like heaven over there but I can’t take one step forward and I don’t want to. I feel like I’m shouting through a tidal wave of water and fire as the two of us try to connect across these landscapes of experience, this emotional gap. My jaw hurts, like I’ve been chewing the air.

Weirdly, when I got back home Ronan was sitting on my dad’s lap listening to The Lord of the Rings soundtrack, perfectly content, even as Rick bellowed from the kitchen (where he was making garden burgers to have something to do with his hands), “I think this is the scene where those big black birds are trying to kill Frodo and Aragorn.”

So, okay, Tolkien it is, I thought. If it’s the day for an alternate universe, why not read about one. The Hobbit. No luck. I tried reading one of Rick’s fantasy novels. Nope. (The “eye of time keeps whirling and whirling”? Really?) I tried my usual go-tos for literary escapism: McCullers, Ondaatje, even Tolstoy failed me. All narratives feel inane and pointless, even those that strive to be both. But I don’t want to read fluffy, supposedly entertaining essays about “being young in New York City” or about a healthy young woman traveling to a tropical island to heal from a break-up, or about how hard it is to avoid adopting an eating disorder in Hollywood. Stories with consequences – real consequences – like Sophie’s Choice or Elizabeth McCracken’s memoir about losing a baby — feel like the only ones worth reading and yet I know I can’t go near them.

I realized that I felt guilty reading, knowing that Ronan never will, that he’ll never understand stories, or at least not in the way that writers struggle and strain to make them known. And then I fell upon Myths from Mesopotamia sitting on the nightstand; I’d been reading it in preparation for a Bible as Literature class that was recently cancelled. Stories that nobody can agree on! Perfect. The cover of the book was even comforting; it reminded me of Indiana Jones, even though he has zero to do with the myths of Mesopotamia. But, as P would say, “whatevs.”

I cracked open the book and found what I was looking for: big, bad distraction in the form of ancient myth. Royal epics translated from Akkadian! Accounts of historical kings from the second millennium B.C.E.! Good old Gilgamesh! Baal and his nasty nostrils! Never before (even as a graduate student in religious studies) had I been so interested in the literary history of Babylonia and Assyria, these tales and fables that are precursors to many of the stories in the Bible.

But before you can read the myths, you must (in good scholarly tradition) be told how to read them. The introduction features a big song and dance about what parentheses mean in the text. This made me laugh. Biblical scholars (or at least the ones I’ve known) are notoriously earnest, nerdy (of course), and unreasonably annoyed when nobody else seems to appreciate the joys of conjugating verbs in languages that nobody speaks and only a few people are able to read. Once when I was in line at the Registrar’s Office at Harvard I heard a woman in my Old Testament class exclaim indignantly, “Um, hello. Jesus didn’t speak Coptic, he spoke Aramaic,” as if someone had just pinched her ass in public.

And so we are told:

[ ] indicate short gaps in text due to damage of tablet clay!

( ) indicate words inserted to give a better rendering in English, or explanatory insertions!

[( )] indicate uncertainty as to whether or not there is a gap in the text!

The exclamation points are mine, but you can practically feel the eagerness bubbling over on the page. Apparently there was a great deal of “scribal activity” in the Late Bronze Age, a phrase which made me think of beetles scurrying out from under rocks, or of undernourished men running around in the hot sunshine with their tablets and what, stone pens? Something. They were recording life, in any case. Already I could imagine dirt-caked tablets hauled up from some muddy underground while earnest archaeologists lingered near their tents, sweating, wearing khaki, safari-ish gear similar to the clothes they used to sell at the Banana Republic in the 1980s, typewriters at the ready, preparing to make some meaning.

It turns out that Akkadian myths and epics and tales got shorter as they aged, not more elaborate; that later scribes simply included signposts, like an outline, for the teller, who was forced, often in the spirit of competition, to embellish the text with his or her (I hope) own asides and ideas and performative techniques. The stories were cyclical and elliptical. Boney. The vocabulary in these later stories was crappy, the storytelling was sloppy, and the plots were ridiculous, at least in written form. (Homer would have had a hissy fit.) The teller was left to fill in the blanks. The people of Mesopotamia, a land between the Euphrates and Tigris rivers in modern Iraq made myths and stories, told tales and fables (as we all do) in order to understand who they were, who made them, what their purpose on the earth might be, and where they went when they died. And then there are those gaps. In some cases, they intentionally left their history full of holes, in others the tablets were irrevocably damaged by time. Who knows what’s missing? (I imagine Akkadian stories for children: Red Fish, Blue Fish in the Euphrates. Tigger in the Tigris.) So how did the story end? What was it like? The answers were forever lost thousands of years ago, and they will remain lost.

We want so badly to make meaning from chaos—it’s why these earliest stories were written, and it’s why later versions were recorded in a book that millions consider to be holy and that, for centuries, has comforted people in times of sorrow and confusion. Ronan’s world, in some sense, will always be chaos. It will always be, as the late poet Jane Kenyon might say, “otherwise.” He will never order his sensory input in the way we do to make stories. He is, in a sense, stuck in the gaps.

Or is he? I’ve always hated it when people said, “oh, you know, his brain is different, so he just sees things differently.” I felt it was a condescending, dopey thing people said when they needed something to say and couldn’t admit that they were secretly glad not to be “different” themselves. But, as Rick once said at the beginning of our journey as parents, “all the clichés are true,” and what I once thought was a cliché suddenly has, annoyingly, some truth to it. There is so much fragility in what we know and understand. Is Ronan unhappy? No. He has no label for that. (Right now he is laughing in my mom’s arms as she jumps, pretending to be a bunny.) Are we any happier when we know (or think that we know) the difference between unhappy and happy? I doubt it. Life is really lived within those parentheticals, in what we don’t know or expect, in what has already disappeared, in what is already gone. When Ronan’s sensory faculties are gone, does that mean his narrative is gone, or will he simply exist in that gap, a place we cannot access because we cannot give up the desire to understand its parameters, to make sense of it? I wish I knew. If his life doesn’t mean anything to him but means something to me, is there an ultimate meaning for his life? Will I drive myself into the ground with this circular logic? Maybe. Will I ever be at peace again? Seems impossible. There is no scientist or scholar or priest who can provide the answers to these questions.

We want desperately to fill in the blanks – of crosswords, narratives, lives, these next few years, tomorrow, next week. We busy ourselves with this storytelling task; it is a way, I think, as all ambition is, of shoving away our fear of death. (In the most moving section of his biography of Flannery O’Connor, Brad Gooch tells us that in her final moments, O’Connor was editing her stories, even hiding them under her hospital bed so that the nurses wouldn’t see them and tell her to stop). Driving home earlier today I saw a man with a tree on top of his Subaru – a new, healthy-looking, bushy-branched tree, not a tired old tree on its way to the dump post-Christmas. Hmmm….Maybe a family that decided to celebrate Christmas at the beginning of the year instead of at the end? Why would they do that? Who are these people? What color is the carpet in their living room? What do the husband and wife talk about when they go to bed at night? Do they still love each other? Already, I’m telling a story. Trying to make meaning from a single moment. Why can’t it just be a damn tree?

For Ronan, it can. He lives and always will live in those gaps of knowledge, those careful, fragile holes in the script of story and meaning. We get angry and our skin gets warm. We get sad and we feel like we’ve eaten a brick. And then we start sifting, and ordering, and shaping stories. We have our clay (the senses) and then we start throwing it around. We start messing with our tablets. We think they’ll last forever. For Ronan, there is no narrative to process, there is only…what? I don’t know. I want to tell his story, although it (obviously) so quickly becomes my own. How would he “describe” his experience today? Would a touch be feathery? No, he has no concept of a feather. If we take him to Spain he might sit in the sun but he won’t register “bright” or “soft” or “summery” in the way that we read those words and instantly compute meaning. He is going forward every moment, leaving everything behind. No analysis, no memory, no stress, no desire. He lets everything pass; he lets it all get lost. He lives in a gap that no scholar or parent can translate; there is no map for his meaning. In this way I am somehow divided from him. I ardently, fervently, even violently, wish that I could dwell in the space with him, if only for a moment.

Author tags:

tolkien, parenting, death, loss, ronan

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This rips my heart. It's beautiful and painful and I'm at a loss for words.
What Ingrid said.
"We get sad and we feel like we’ve eaten a brick."
I send you and Rick and Ronan prayers ...
I lost my 1 year old to cancer after a 6 month struggle, so while I know your pain and your fear I do not compare my pain to yours. I always wished I had written everyday not to be morbid but to remember the good better. I am glad you are doing that. I am so sorry all I can say is love him, hold him, and when the time does come set him free. Someday the sun will shine again....I promise.
I have often found it amazing people around me could go on living a normal life while I have felt such turmoil and sadness. It must be very difficult to live the whole one day at a time thing right now, but I'm sure living in the moment with him is all you can do, right now. Bless your family.
I rated your post earlier, but was unable to post a comment because I was so overwhelmed with your story and with your impossibly beautiful writing. Your post prompted me to read your others. Since I cannot say "I understand", I do want to say that you have a way of writing that touches the soul. For what it's worth, I look forward to more posts from you. I want to say more, but there is nothing more I can say....
I think the fact that your Rate number is about 3 times your Comments says a lot. Nothing anyone can say will take the pain away. Only time can heal this kind of hurt. And writing. There's a certain catharsis in putting it all down. As far as an answer for why this happened to good people? Nothing in any of the literature I've read, religious or otherwise, has helped me. My own sense is that bad stuff just happens. It 'rains on the just and the unjust.' R for sure.
There aren't any words, but I am touched very deeply by yours. Keep writing.
I am speechless after reading such beautiful, moving words about something and someone that clearly cannot be described with language. Keep writing, is all I can say.
I feel as if I've eaten a brick. The magnitude of what you are facing overwhelms me. You tell it well.
This is generous and beautiful writing about a generous and beautiful mother. r
I'm not sure what to say, other than offer the opinion that you are facing an indescribably difficult situation with grace, intelligence and elan. You are actually helping others while you deal with your challenge: what a remarkable gift; I hope that realization gives you some salve during this ordeal.