The Still Point Of The Turning World (4 page)

We all want to believe that we’re on solid ground and that we won’t be the ones to tumble into the mud. But we will. Of course, spouting the existential ponderings of an ancient Sumerian or a dissident writer might be a bit much for the supermarket checkout line or even among a group of artists, intellectuals or writers who are supposed to be thinking on a less quotidian level. We all want to feel in control of our destinies, our wishes and desires; we crave the illusion of control.

In ten years we will have the sequenced genome. We will believe that it is possible to know everything there is to know about who and what we are and adjust expectations and outcomes accordingly. Maybe our genetic material will be included in online dating profiles. Maybe I’ll be able to sit on a couch and ask the people sitting opposite me in leather chairs which diseases they carry (because all of us carry something) and which ailments they will likely develop (state the odds, please, for effect) when they age. Maybe I’ll ask,
How can you possibly live while carrying around such unfortunate genetics?
We think we will know how to eliminate risk and illuminate only possibility. We believe we’ll be able to see everyone from the inside out. We’ll be shining our flashlights into one another’s mouths, probing for a look, for some great Truth. Will we really want to look? Is that how we want to be known?

We Americans thrive on notions of self-improvement and transformation; we believe this is part of our national ethos and are befuddled by situations that defy solutions. But as those of us who have or have had sick kids know, some situations can’t be fixed. Instead they must be borne in whatever ways we can manage. I decided that I was not responsible for managing other people’s rude reactions or misconceptions. I was unable to mitigate other people’s fears, but I could certainly love Ronan. That was my only job. Babies with disorders like Tay-Sachs don’t care about perception, or measuring up, or looking a particular way. I tried to remember this when people stared at Ronan. His experience of being different was
not
mine, and it did, in fact, force me to rethink my own coping strategies, my own lifelong neuroses, my own obsession with being one of the “normal” pack, finding a place, a way to be, a home.

•   •   •

My real-life search for home was exhaustive and nomadic, spanning numerous cities and countries, houses and apartments, jobs and relationships. It took years, but by the time I arrived in Santa Fe in the summer of 2010, I thought I had finally figured it out. I had a steady teaching job, a slew of terrific and loyal friends, and a family. I had my beautiful son, who was then five months old. That first night in Santa Fe, after Ronan was asleep, I lay in bed and watched monsoon rain waterfall over my window and listened to thunder pummeling the seemingly endless New Mexico sky. I remembered that silly dollhouse dream as I had so often over the years and thought:
This is even better.

When Ronan was newly born, a friend of ours asked, “Isn’t it interesting that, of all of us, Ronan has the most life ahead of him and yet he’s the least worried about it?” The first part turned out not to be true, of course. Ronan’s life would be short—but he would never worry about its length or quality. He would never feel shame, fear or regret. He would never hate himself or his parents. He would find nobody to blame. He would never sit and stare at a house inside a glass box and wish for his life to be different; he would just live it. He would always be at home in his body, the only one he knew, a body he didn’t question. He was always, without any effort, at home in the world.

Our home, our life with Ronan, was not the definition of heartbreak. It was, to put it bluntly, the truth about life: that it exists side by side with death. Other cultures and traditions are acutely aware of this intimate pairing. In 1996, as a Fulbright scholar in Seoul, I celebrated the autumn festival of Chusok with my host family at a raucous, boozy party at the family grave plot, complete with music and the favorite foods and drinks of the departed. In one Día de los Muertos image from Mexico, images that are plentiful in Santa Fe, a robust, rosy-cheeked man walks with his skeleton rattling in his arms. One fall afternoon before his terminal diagnosis, I walked with Ronan on the arroyo path near our house, his smiling face peeking up at me from the front pack, the last of the day’s sun warm on my shoulders, the mountains darkening to purple in the distance, and I thought,
This is a peaceful place to die.
Since that day, I slowly learned a lesson that I had been avoiding for years, an avoidance that had fueled my frantic search for a home while simultaneously making it impossible to find. I finally began to pick up pieces of wisdom that I had been walking past for most of my life.

In Frances Sherwood’s novel
Vindication,
a fictionalized account of the life of Mary Wollstonecraft, the tormented and occasionally suicidal protagonist is desperate to discover the right way to live. She tells her longtime friend and publisher that she is overwhelmed by “all that might be, not be, so be it, your mind going a hundred thoughts between this moment and the next.” Her friend replies: “But my dear, you have arrived. You are here, at your life. Put yourself down, settle in. It is yours. You have been living it all along.”

Years ago I was walking down a sun-washed street in Antigua, Guatemala. Kids rocketed by on little pipe-cleaner bikes. Nobody drinking coffee at the outdoor cafés reacted when the active volcano in the distance let out a soft puff at irregular intervals, as if it were taking slow, shallow breaths.

Passing an open doorway I saw a man teaching a woman to dance in a small, plain room. He watched her face as she counted softly to herself in English and dust spun in the sunlight on the floor around their moving feet. As I approached the end of the street, I watched a woman wearing a ragged backpack and long braids cross the cobblestones and knock on the door. She looked weary but eager. After waiting for a moment she knocked on the door again. I stopped and waited, too. Suddenly the door opened and a woman with long dark hair flung herself into the backpacker’s arms. They pulled apart and looked at each other, hugged again. The two friends or lovers or sisters rocked from side to side, mouths trembling, one woman’s arms barely able to reach around the other’s huge pack, reunited. I felt homesick suddenly, for my friends, for connection. I could see so many of them in that moment. I bought a stack of postcards and scribbled a bunch of little love notes as the volcano belched softly in the distance.
I’m here in this place but do you remember when . . . xoxoxoxoxo.

I, too, finally arrived. I got the transformation I longed for, but it didn’t happen in the way I’d expected. I felt weirdly at home in my world in Santa Fe under a big sky with my beautiful, dying child. Walking on the arroyo path, listening to Ronan laugh, watching him eat and sleep and play, sitting with him on the couch, sometimes for hours, teaching my classes and writing my books. It was not the life I imagined, not the dollhouse, but it was home. In the midst of grief I often felt the way you do in that moment when you hold in your arms the person who has traveled a long way, maybe all their lives, to reach you.

4

Human beings have always been mythmakers. The most powerful myths are about extremity; they force us to go beyond our experience. There are moments when we all, in one way or another, have to go to a place that we have never seen, and do what we have never done before. Myth is about the unknown; it is about that for which we initially have no words. Myth therefore looks into the heart of a great silence
.

—Karen Armstrong,
A Short History of Myth

O
pening my eyes on that January morning after Ronan’s diagnosis was like waking up in an alternative universe—a silent world, mindless and still and as bleak and vast as the desert I lived in. Rick and I began the day with Ronan snuggled in the bed between us. We cried. First Rick, then me, then Rick again, then me again. We didn’t know what to do, how to be with each other, with ourselves; we couldn’t think of a thing to say. Terra incognita.
We were bereft, quaking with a wild and terrible vibrancy. We had no narrative anchor, no arrow to point us in any direction that didn’t promise misery as its endpoint. We were like Paleolithic people gazing into the sky with fearful awe and wondering what disaster or wonder would pour out of it next. The historian Rudolf Otto quoted by Karen Armstrong:
mysterium tremendum terribile et fascinans.
That was the first few days.

Then we began feeling around the future, lifting its edges, sniffing it out. We talked about taking Ronan for hikes again when the snow melted from the hiking trails near our house. 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 and get some exercise, even though there was a knot in my stomach that refused to loosen, and even though I felt a great need to escape the house and my life (and then felt guilty about this desire) and even though being out in the world felt like being flogged. Every image and sensation felt thunderous and unsafe. 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 in order to get it together enough to stay on the road. Certain places I affiliated with a nondiagnosed Ronan were suddenly off-limits, and I made a list: the Santa Fe Farmer’s Market; certain coffee shops; the Antlers Hilton in Colorado Springs. It would be like walking around in the shadow of a former self holding the shadow of a former baby. I simply couldn’t bear it.

When I saw my friend Carin at the gym, my best girlfriend since moving to Santa Fe, I told her about Ronan’s diagnosis. I learned quickly how to tell people coldly, matter-of-factly and, of course, she was wonderful, offering love and support. We’d moved to Santa Fe in July 2010, but you would have thought we’d lived there for twenty years. Our friends Rob and Lala brought cinnamon buns and scones and jocular humor and kindness to our house. They bounced Ronan on their laps and warned us not to isolate. Nancy sent a huge basket of fancy deli food and researched elliptical trainers that we could buy for the back room so we could still get some exercise if we ended up staying home more. Terri and Jules helped Rick collect the machine in Terri’s truck. All of this help was offered by people I didn’t know well (yet) at all. I was grateful.

But when I told people what was happening in our little world on Sol y Luz Street, I felt a great divide—between me and other people, and also within me. As I said
my baby is dying
(from the very beginning I refused to sugarcoat), as those words left my mouth, I was conscious of the fact that there was a “me/mother” before I knew Ronan was sick and a “me/mother” now anticipating his death, and that these two people didn’t know each other at all, and so I no longer understood how to relate to the person standing before me, waiting and wanting to help, even if it was someone I respected or even adored. With Rick, too, 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? All day my jaw hurt as if I’d been chewing the air.

When I got home from the gym, Ronan was sitting on my dad’s lap, perfectly content. Rick was in the kitchen, where he’d begun to retreat on a daily basis, whipping up elaborate vegan meals, in order (I think) to have something to do with his hands. Chores were getting done at lightning speed. There wouldn’t be one tissue in a wastebasket before he’d be dumping it out. “What are you doing?” I’d ask after a Xanax-induced nap. “Organizing the forks,” he’d reply. Now he tossed onions into the skillet and I wandered into the bedroom, anxious to set my mind on something, anything, else.

I tried reading one of Rick’s fantasy novels. Nope. I tried my usual go-tos: McCullers, Ondaatje, even Tolstoy failed me. I browsed through my small selection of fluffy, tra-la-la books. All narratives felt inane and pointless, even those with the obvious goal of being both.

I felt guilty reading at all, in fact, knowing that Ronan never would, that he would never understand stories, or at least not in the way that writers like me struggled and strained to make them known. And then I fell upon
Myths from Mesopotamia
sitting on top of the stack of books by my bed, a book I’d been reading in preparation to teach a Bible as Literature class. Stories that nobody could agree on! Perfect.

I cracked open the book and found precisely 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 BCE! Good old Gilgamesh in his fugue of grief after the loss of his dearest friend, his epic quest for immortality! Baal and his nasty nostrils! Never before—even while I was in divinity school—had I been so interested in the literary history of Babylonia and Assyria, these tales and fables that were precursors to many of the stories in the Bible.

Akkadian myths and epics and tales got shorter as they aged, not more elaborate. Later scribes simply included signposts, like an outline, for the teller, who was forced or, I guess, invited, often in the spirit of competition, to embellish the text with his or her own asides and ideas and performative techniques. The stories were cyclical and elliptical. Bony. The vocabulary in these later stories was crappy, the storytelling was sloppy, and the plots were ridiculous, at least in written form. 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, they 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 were 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? How did the story end? What was it like? The answers were forever lost thousands of years ago, and they will remain lost.

These earliest stories were written out of the primal human impulse to make meaning from chaos. Ronan’s world, in some sense, would always be chaos, his brain unformed, his experience unordered. It would always be, as the late poet Jane Kenyon might say, “otherwise.”

Was Ronan unhappy? No. He had no label for that.

Are we any happier when we know (or think 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 disappeared, did that mean that his narrative went with it, or did he simply exist in that gap, a place we could not access without relinquishing the desire to understand its parameters, to make sense of it?

The next day, brimming with myth, I drove past a Subaru with a tree strapped to the top—a new, healthy-looking, bushy-branched tree, not a tired old tree on its way to the dump during those first few weeks of January. Hm . . . 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 were these people? What color was the carpet in their living room? What did the husband and wife talk about when they went to bed at night? Did they still love each other? Already, I was telling a story. Trying to make meaning from a single moment. Why couldn’t it just be a damn tree?

For Ronan, it could be. That was the secret of unlocking his myth; that was the way to read it, the guide. He lived and always would 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 as if we’ve eaten a brick. And then we start ordering, and shaping, and sifting stories. We have our clay (the senses) and then we start throwing it around. We start messing with our tablets. We mistakenly think they’ll last forever. (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 try to stop her.) For Ronan, there was no narrative process, there was only . . . what?

My mind wanted to make sense of Ronan’s world, his experience, as if this would somehow make sense of why or how this could have happened to him and to me, as if I might, in theology or art or ancient myth, find some reason, some answer, some precedent. I wanted to be present for my son, but my mind needed to spin and spin and spin, searching for solutions, the salve of meaning, story, language. Instead I only generated more questions, a kind of frantic curiosity that would, for a brief moment, stave off the feelings of helplessness and rage, the gripping, shattering, closing-in sadness like two hands rattling the heart. I took Xanax, and I thought of taking more Xanax, the whole bottle, just to escape. I drank one glass of wine and then another. Everything in me wanted to look away, to disappear, and, often, to die. I called other moms and they talked me down, back into the room, back into the body, into my family, back to my baby.
He’s not in pain. He doesn’t know he’s dying. It’s hell, but you’ll get through it; you’ll survive.
And this, of course:
He needs you. You are his mother. This is your task, hellish as it might be. You have no choice.

My other task beyond physical care, I began to realize, was to find Ronan’s quiet, gap-ridden myth, his idiosyncratic narrative—to interpret it, share it, and learn from it. Mythology was the only solution, with its ability to, as Armstrong notes, “awaken us to rapture, even in the face of death and the despair we may feel at the prospect of annihilation . . . Like a novel, an opera or a ballet, myth is make-believe, it is a game that transfigures our fragmented, tragic world, and helps us to glimpse new possibilities by asking ‘What if?’” Impossibly scary “what ifs” held within them some possibility, some opportunity to see the world in a different, more complex way. To dwell more consciously in the gray areas.

What if Ronan “described” his experiences to me? Would a touch be feathery? No, he had no concept of a feather. Words and descriptions were meaningless abstractions. He was simply going forward every moment and leaving everything behind. No analysis, no memory, no stress, no desire. He let everything pass; he let it all get lost. In that gap where he existed there was no map for his meaning.
But there will be,
I thought. If Ronan needed a myth, I would write one. If the only way to stop being divided from him, if the only way to dwell in his space, even for a moment, which I ardently, desperately wanted to do, was to stare into that silent world and make it speak, then I had work to do. I shut the book of ancient myths and returned to the living room to be with my family. Ronan was laughing in my mom’s arms as she jumped across the room, pretending to be a bunny. “Here he is,” my mom said, and flew him, Superbaby style, into my arms.