The Myth of Meaning

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.

16 responses to “The Myth of Meaning

  1. Emily dear, you and Rick are dwelling in that space with Ronan. Thanks for letting those who love you draw close to you as we try to absorb your words. Next to my bed is Oppenheim’s book, Ancient Mesopotamia, a portrait of that civilization gleaned from those small clay tablets buried for thousands of years. Tonight I will hold you close as I open it again. You are precious to me.

  2. Some of your remarks remind me of a story we would occasionally read to David and Ryan, “Fox Eyes.” It attempts to put into words for a child what a fox experiences in the course of a day. As you put it, it’s all “in the gap.” I can’t imagine the challenge of finding a way into Ronan’s experiences in words fit for adults, filling the gap, but in his way, not yours. I think, too, of Tolstoy’s “Three Deaths,” but, from what you’ve just posted today, I know you aren’t able to go there. I’ll read it again instead.

  3. Emily, You are doing your best thing in this worst of times: that’s exactly what you should do. There may not be solace in your and Rick’s life now, but you will regard these words you write now as a gift to yourselves in years to come. So go and create a world for Ronan. I’ll be following. Much love to you. Jeff

  4. Dear Emily,

    Tara shared with me about Ronan, and I am heartbroken. I’m not a writer, but I am a mother, and I tell you, every mother out there has their arms around you and Ronan.

    As you experience these days with Ronan, know as he goes forward, he is not leaving everything behind. He does not let everything pass or let it all get lost. There is memory, there is desire. You know this, because when he sees your face when he wakes, there is joy. As you play with him, you can see his excitement and anticipation. He is there. He is right there. Even as you all move forward in his disease, he will sense when you are there, and to him it will mean that life is good. You are not divided from him, you are one with him, because that is how he perceives you. From you, he is learning love.

    Take care,


  5. T & I are so sad (doesn’t describe it) to hear this news about Ronan. It’s hard to take it in. Sending you all much love and know we are here for you if you need anything. Emma

  6. Thank you for this window into what you’re going through, Em. I’m so grateful that you have these superpowers of imagination and storytelling and that you are using it for yourself and Ronan and to draw in all of us who are sending love from a distance. With so much love, Carrie

  7. Emily —

    I keep staring at the empty box trying to think of “right” or “appropriate” things to say. But there isn’t anything. I could talk about my experiences which suddenly pale in comparison. I could advise you to be strong. But to me, your courage is (yet again) humbling.

    Just be Emily, Ronan’s mom, and all that that means. Your brutally honest writing will pave this road for you.

    I’m thinking about you.


  8. You know, they say there is a silver lining to every cloud, but often it is so hard to see, especially when that cloud bursts into a seemingly incessant rain that threatens to wash away any chance of us feeling joy again…

    As you know, we lost our beloved daughter Ursula just a few weeks ago. The first thing that hit us was the loss of potential, hers and ours as a family with her. We will never get to see the person she would have become if she would have lived. She will never achieve the things she might have achieved, never have children, never know what it’s like to experience all the things that life at 30, 40, 50, 60 years of age has to offer.

    But the most acute pain was from what we would miss tomorrow – the chance to hear her voice one more time, to hold her in my arms one more time, even to help her find her keys one more time – just one more time, please god, so that I can hear her, hold her, help her while fully aware of how precious her life is to me and fully cognizant that no longer how long it lasts, it will not last forever.

    So, if there is a silver lining in this terrible news it is that you will never suffer under the illusion that we have time to be impatient, time to be frustrated, time to be bored, angry, or resentful – time for anything except gratitude for the time you do have together. Your gift in this is the ability to see past the illusion of permanence so that you enjoy every single moment of Ronan’s time here on Earth.

    Whatever Ronan’s purpose is here in this body and however many times he will spin around the globe and roll around the sun with us, he will know love every single day because you will be more conscious than I could have been of how precious each of these shared moments are. We must always remember that our bodies come and go and our time together is short no matter how long we live, but that eternity is in the moment. May Ronan bask in the rays of our love and our joy that he has chosen to be a part of our lives NOW. When he leaves this world as we all will, he will leave having experienced a pure kind of love, the unconditional kind. What better life could there be than that?

    I can only imagine how you must feel, but I hope you will forget what these “experts” say. Life has a way of producing miracles – so many in fact that the only ones we notice are the ones with the greatest contrast. As you perceive the miracle that Ronan is, you may find that where there is love everything else comes second. May Ronan’s life be one of miracles manifesting everywhere. May his purpose in this body and in this life be fulfilled in love, and may you feel blessed for this opportunity to see to it that his time here is wondrous and good.

    Much love,


  9. Dear Emily, my love and prayers go out to you and your family. You are wondering what to do and all I can say is you are doing it! Being there, holding your son and loving him with all your heart and soul while he is here for the precious time God has ordained. I look forward to your blogs and walking beside you and sending comforting words in prayer from my heart.

    Love, Marcia Pitkin…mother of your friend, Barbara Pitkin

  10. Emily, I’m devastated to hear this. Yet I know you will learn to love as never before, and perhaps even be able to hope. Research is being done at every moment. Regardless of what the doctors say, you never really know. Your little seal came to the planet with a big mission. You’ll know what it is as it unfolds, but he will live a beautiful life with you and your husband as his parents.

    Love, Tina from Antioch

  11. Beautiful prose, a heartbreaking and poetic way of dealing with your pain. I really appreciate your writing, insight, and know that you and Rick are going to be strong enough to emotionally survive, thrive from these hard lessons in life. I love you guys!

  12. Hello Em. Thank you for this. I love all sorts of bits of you, especially your heart and your passion and your inner and outer beauty, but this reminds me how much I love your BRAIN.
    I’ve been pondering this thing about story and what Ronan will ‘get’ around narrative and story. I’ve been thinking last year about the 3 layers of being that I think is sort of Hindu/Buddhist, certainly gnostic – personality on the top, vulnerability on the middle (and along with it, all our stories, our histories, that get bound up with our emotions, that grow with us), and underneath, the still, constant, essence. “At the still point of the turning world” is what TS Eliot said. This is my belief system, and I don’t want to impose it on you, but your post makes me reflect a lot about my beliefs, for which I thank you. So I believe that Ronan is in his essence right now. I guess that means I don’t think of it as a gap. It’s not an absence. It’s a presence. In each present moment, which is really all that there is. The present is gone, the future hasn’t yet happened. And kids get that. They’re amazing at that. And Ronan already gets that. xxx I love you, and Rick. Big kiss. Other-Em.

  13. Dear Ronan,

    I just heard about your condition and, though we all wish we could change your story, you’ll have to trust me when I say, it’ll be OK.

    Just like the rest of us, you will live 100% of your life and, whatever the length, others will think it too short. You will make the most of the moments that you enjoy and suffer those moments which you do not and you will hope for more of one than the other. Each waking day will be your eternity and sleep the brief blinking of an eye. And, as you begin to develop concepts around the meanings of things, you will likely grow attached to some and averse to others – try not to identify yourself too much in those concepts. Instead, live as most people do not: Live as if this moment matters – because it does. Live as if everything is the mystery that it represents – because it is. And, most importantly, live as if it all might disappear one day – because it will.

    Ronan, you are young enough still to understand that things are just things – that Life simply is. Many of us grown ups have a conceptual understanding of that but we have a hard time grasping the beauty of it. Instead, we develop crafty mythologies around it. We add a dash of incense and a sprinkling of voodoo and a cartload of sympathetic reasoning. Lately, we’ve been poking around inside our own heads trying to figure out its schematics in order to find a shortcut to something. Ronan, it’s beginning to look like all of our concepts (and certainly their meanings) are things we have simply made up and, if we accept that reality, then, thankfully, we may all experience the same timeless gap.

    Anyhow, I think your mother is on to something really big (I told you she is fearless) – a tree is just a tree. A moment is an eternity. Love is. Ronan, I know that you know these things – do your best to remind your mom that she knows them too.

    And thank you for reminding me.

    Your friend,
    JC Jaress

  14. Eloise Klein Healy

    Dear Emily and Rick,

    Tara delivered the news to me about Ronan and I can say nothing but that I love all of you–little family–and I feel terrible about the pain you are experiencing.
    But, you are still also the “Emily” I met on paper, on the phone, in an interview, and in the halls at Antioch. You are a miracle of a person and you have pulled that miracle around you into a sweet swirl with Rick and Ronan. Not all miracles are perfect ones and not all of them play out as well as we like. But, you will find a way to make this coming time worth every minute of you living it. I know because it has always been who you are.

  15. I know nothing is any consolation right now, but I want you to know that your words are touching nerve central for me and so many others. Your eloquence in the face of this harrowing emotional terrain is heroic. Many of your descriptions of processing this unfathomable injustice are already seared into me permanently. I have no doubt I will turn to memories of your words in the face of my own suffering as I also struggle not to avert my eyes and as I also feel to be standing amidst the fires of hell while a well-intentioned friend is on the shadowy beaches of Malibu. Who cares? I know. Not you. Not now. How could you? Still: you should know, your words are not falling brittle to the ground. They are charged and alive and active and creating shifts in consciousness and consequences ranging from awareness of Tay-Sachs to an awareness of our own emotions for which we may not have had the words that you have in your arsenal. If only our pathetic empathy could serve some useful end, could somehow dull the daggers in your heart. I know it is a paltry offering, but I am forever a devotee of you and anything you write. You are a warrior. A mother through and through. You will care for Ronan for as long as you are able. And you will love him for as long as you live. And you will survive. You will be happy again. It happens. In spite of our best intentions.

  16. You actually make it seem so easy with your presentation but I find this topic to be actually something which I think I would never understand. It seems too complicated and extremely broad for me. I’m looking forward for your next post, I’ll try to get the hang of it!

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