The Still Point Of The Turning World (8 page)

We don’t like this. We want will; we think relentless self-improvement will literally improve our lives, allow us to literally control our happiness; we want to believe we have power over our own destinies. We, quite simply, do not have any control, not really, and this is perhaps the hardest lesson to learn. After Ronan’s diagnosis I often stood over him sleeping in his crib and wished I could lie next to him, press him to me, untangle his DNA, restitch it, rebraid it, fix it, make it right, take it back somehow, change the odds. (
How can there be mysteries this size?—
Naomi Shihab Nye, “Little Seal”.) I marveled at how beautiful he was, how wonderfully made, and yet, from the moment of his birth (and even before), Tay-Sachs had been chipping away at him, unmaking him in some bizarre reversal, with each lived experience taking him backward into a world he (and I) would never fully know or understand. I hovered there, feeling like a just-picked scab, raw and messy and cold, remembering lines from “Settings,” a favorite Seamus Heaney poem:
Where does spirit live? / Inside or outside / Things remembered, made things, unmade?
I swayed and grappled, thinking of walking with Ronan through the changing aspens of the Sangre de Cristo Mountains, the almost sheer yellow light tumbling through his eyelashes, the way he shouted louder when he realized that his voice would carry far through the clean fall air. I felt a huge loss of innocence. I touched his forehead with my hand. “One must believe in the reality of time,” Simone Weil wrote in her
Notebooks.
“Otherwise one is just dreaming.” Ronan lived, I believed, in a perpetual state of being in the now that people tried to achieve on expensive retreats, chanting and doing yoga and tweaking their nutritional habits. Was Ronan, in this way, more evolved? Did he embody a Tay-Sachs version of Nirvana, a kind of existential bliss, or was this an attempt to sprinkle glitter on a pile of shit or gloss over an absurdly tragic situation? Could it be both?

I thought of the sculptures and installations made by my friend Carrie, whom I met at the Fine Arts Work Center in Provincetown. Her work—sculptures made from paper, delicate drawings with a fierce message—creates that rare, raw enchanting experience that many of us render impossible because we analyze and criticize and categorize what we see and think and feel: wonder. A wall of paper bricks that look solid but shake and tremble when you walk by, as if you’ve unearthed a ghost or the walls are shifting before your eyes, all the certain made uncertain; sculptures that look impenetrable on the first glance but that are precisely, delicately made. One of her exhibits, “Breathe,” was like stepping into the experience of an epiphany—a roomful of light. Each piece of paper cut by hand, the whole room fragile and fierce and paper-thin and a particular shade of yellow that, like the Sangre de Cristo aspens near Santa Fe, when gathered en masse creates an overwhelming, effervescent glow. Power and fragility combined; the color of both vulnerability and strength.

I allowed myself to imagine Ronan in a landscape of light and continuous revelation, his life lived as a series of singular moments. I wondered if in some ways, the greater loss here (or at least the most stupefying one) was mine, not Ronan’s. Yes, Tay-Sachs disease would take his life; the number of his days was determined long before he could make a decision to transform the life he’d been given in one direction or another. He was denied that, but I couldn’t imagine that his world was so remote, so unknowable. In this short story of his life I could not believe that he had been denied wonder. What if every moment of Ronan’s life was, for him, like stepping free into a space, into a “first,” into a state of wonder. Wonder that exists outside—beyond—narrative, wonder that feels like entering, again and again, for the very first time, a shining room. Dazzling but somehow expected, like the light given off by row after row of luminous trees—a blaze of impossible color. Pure experience without editorializing by the intellect. Moments that aren’t folded into story but instead give off their own light. That must be the world of Ronan—his body, his mind, his heart. These thoughts comforted me.

That March, Ronan’s birth month, the month that is both the start of spring and the end of winter, Rick and I met again, for the last time, with Ronan’s geneticist. He never said the words “luck” or “fluke” to describe our situation. If he had, I would have left the room or possibly committed a violent crime. The doctor went on to explain that because Rick and I were both carriers of the Tay-Sachs gene (both parents must be carriers for a child to be affected), we had a one-in-four chance of having a baby
with
the disease. He asked Rick and me to lift our hands, palms facing him. “You’ve got two sets of genes here,” he explained, “and there are four possible combinations.” He closed Rick’s right hand into a fist and brought it to my open-palmed right hand, and then did this several times in various combinations of palms and fists.
This
or
this
or
this
or
this.
It’s as random as a doctor moving your hands around, like a genetics shell game but with unwelcome prizes waiting in your body and your blood that contain unfathomable odds.

That night I wept into the phone with a friend, asking her to do a Tarot reading or a psychic reading or
something anything something
to stop the world from spinning, to give me hope. I wailed about being unlucky and that I’d had
all
the tests and how could I possibly have this in addition to everything else and this was my worst nightmare come to life and hadn’t I had enough shit to deal with and what are the odds and how would I ever trust anything again and
why why why.
She gently reminded me that I’d had a lot of good luck as well. She was right.

After I was mugged one summer in New York City, just a run-of-the-mill bag snatch (although of course it had to be my only designer bag), the cop who was driving me back to my apartment got a call on his radio. “Someone just got stabbed a few blocks from where you were,” he said. “And she’s dead. You’re lucky, sister.” When I decided to hitchhike in order to save money while traveling in Ireland, I climbed into two different cars with two different and very obviously drunk drivers; I traveled in the back of a van driven by an older man who was high and wondered if I wanted to elope in Scotland (I did not); and my final lift was with a shady twentysomething Australian who asked me, when it was just the two of us in the car on a dark road in the west of Ireland and I was now, finally, stupidly, a bit scared: “Are you a gypsy wanderer from the land of Nar?” “Of course,” I stuttered, thinking Nar sounded badass, and that maybe he’d be afraid of me. “That’s so fucking brilliant,” he drawled, and left me off in Galway, untouched. I could go on. Would I have been unlucky had I been raped or murdered or harmed in any of these situations? And would it have been my fault? Is bad luck like a mist that falls on you or a blizzard you stumble into when the sky is otherwise clear?

The geneticist told us that if we all had our DNA analyzed, we’d freak out. We’d be horrified by the many possibilities that may await us next year, in a decade, tomorrow, next week, a moment from now.

“So it’s about luck,” I said.

“No,” he said. “It’s about life. Any of us, at any moment, could manifest something we don’t expect.”

I misunderstood the concept of luck by believing it existed. I didn’t need to feel cursed because Ronan had a terminal illness; I was long past caring what people thought about my own disability and what may have caused it or why. We talk about luck, I think, because it makes us feel blessed (another troublesome, annoyingly “folksy” word that is spoken by a character, at some point, in every episode of
Little House on the Prairie
). Saying “I’m so lucky” might feel to some like a priestly incantation, the casting of a protective spell that makes people believe that they’re standing on solid ground, far from catastrophe, while the unlucky folks within shouting distance squirm around in the quicksand with their cancer and diseases and dying babies; but life—not luck—will find you eventually. To say “I’m lucky” feels almost mean-spirited. It is mistaken for thankfulness, but it’s not; it’s smug and congratulatory, as if bad luck were a mischievous old gossipy lady with bad breath and kleptomania whom
you,
super smarty-pants you,
were wise enough to kick out of your house before she slipped the family jewels into her big ugly purse while everyone else was stupid enough to let her in and serve her expensive chocolates and cups of champagne.

The snow stopped and spring flirted with Santa Fe again. I took Ronan for a walk along the arroyo path, his path, where the snow-touched mountains were visible in the near distance, flanked by the purpling hills. Some new leaves trembled on the trees. The sun was strong but not warm. Ronan quickly fell asleep, as he did in his first three months of life, when he would
only
sleep when I walked with him, and walk I did, for nearly four hours a day or more, up and down the streets of Brentwood, California, dripping with sweat while he snoozed in the front pack. He was smaller then, and when I saw my walking shadow I looked pregnant again, as if I’d swallowed a basketball. The legs and feet of a bigger Ronan cast shadows on the ground.

I stopped for a moment and gently removed his hood. I let the wind ruffle his red-blond hair and I looked at his sleeping face and I rocked him for a bit in the sun. We kept walking into a tunnel strewn with dry leaves where both our shadows disappeared and we were alone. I stood still and listened to his breath and mine. I felt a momentary flash of peace, a great still pause. T. S. Eliot’s “still point of the turning world,” and of course this terribly tender love, and I thought,
This is all I have to give,
and I tried with all of my strength to pass that feeling into Ronan, and then I thought,
Remember this.

There’s a scene from the film
The Curious Case of Benjamin Button
that haunts me
.
Unlike Kushner’s child, Button was born an old man, but he, too, is aging back to death. That’s some pretty crappy luck, if you’re going to understand it that way, and his lover, too, was jilted out of a lifetime with him. As she, the luminous Cate Blanchett, grew old and gray and tired, he grew young and strong and super hot, that is, he turned into Brad Pitt. The accidental circumstances of his birth—his genetics—make it impossible for them to live out the dream of love: having a family and growing old together; in short, sharing the same life timeline.
I was unable to forget the scene when she is rocking her former lover, now a baby, to sleep. She’ll rock him until he fades completely, until he’s gone. The light is soft and natural, and she rocks and rocks and rocks. She has nowhere to go, and she wouldn’t dare escape that moment or the next one, or the final one; she can only rock and wait and be. She’s not angry, like Frankie in
A Member of the Wedding
. No. She’s gone beyond that, and her face is calm but anguished. It’s not easy for her to sit there. In fact, it’s the hardest thing she’ll ever do, rocking through these moments. Her beloved is no longer hers, and she is no longer his. They are slipping apart. The world is loose and turning and jagged and awful and she can feel it, it won’t stop, nobody can stop it and it’s happening so quickly and her touch is gentle, yes, and her words are soft, of course, and she looks broken and she is, her heart is beating fire, but she still smiles at the baby as she rocks him. She comforts him, fakes calmness and serenity for his sake. In this smallest of moments she is beyond luck, beyond its frivolities and its lies. She sings, and her voice doesn’t break. Because this is not the time to be fragile. This is the time to be
fierce.

9

This is how it is with the anxious.

What will not happen is happening all of the time.

—Katie Ford,
“Do You Look Out the Window Because You Feel Watched?”

T
hroughout the month of March I was still waking up almost every morning before the sun rose and creeping into the nursery to watch Ronan sleeping in the dark. Listening. The detached longing, an already-missing-you ache was becoming a familiar feeling. (
He woke in the dark of the woods in the leaves shivering violently. He sat up and felt about for the boy. He held his hand to his thin ribs. Warmth and movement. Heartbeat.
Cormac McCarthy,
The Road
.) As each moment with Ronan passed, I felt as if I were already redefining it, already dropping (behind? ahead?) into a state of retrospection. I worried that memory wouldn’t do me any favors; that it would only make things worse. And yet we took countless pictures of Ronan, already noticing that his eyes were brighter in photos from several months before. A constant tug of war: wanting to remember, wanting to forget; wanting this to be over, and of course never wanting Ronan’s life to end. How was this movement, this journey, to be mapped?

I watched Ronan’s fingers twitch, listened to his heavy dinosaurish breath, admired his soft wet open mouth and his little butt shoved up in the air, and then, finally, sleepy again myself, and sad, I stretched out on the floor next to his crib and fell back to sleep. I woke to his grumbling and fussing, scratching his sheet with his little fingers no bigger than the smallest worms. Rubbing his snail ears slowly back and forth across the flannel, shaking loose whorls of sticky earwax that I lifted away from the edge of his ear with my pinky finger.

I plucked him from his crib and said, “Hello, Zoat!” He gurgled and said, “Gee.” “Well, gee back at you,” I said, and sat him up. I always tried to mirror his different gees, since it’s the only word he said, the only spoken language we shared. I had to lay him gently on the changing table, slowly, slowly, so that his eyes wouldn’t roll back into his head quite as much; it took very little to upset his balance and cause his hands to tremble and shake.

Ronan at one year was the same baby we knew at six months, only less mobile and verbal. Less bright-eyed. Having no expectations for his development was both oddly liberating and horrific. Watching for decline instead of progress. Always, always, I was taking a backward look, which will be part of grief management until the day I die: breathing it, feeling it, eating it, knowing it, explaining it. Looking back and remembering what it was like, what it felt like, what it still felt like. Sometimes while in the shower or brushing my hair or locking my office door at school or about to take a bite of cereal or putting on my underwear I would think
I may not be a mother next year.

This frequent, sinking feeling meant I had nothing to say to mothers with babies Ronan’s age: I didn’t want their pity (my well-developed radar detected that from miles away); I also didn’t want to hear about what their kids were doing. But in March, Ronan was still giggling wildly enough to give himself the hiccups. Who cares if it was the painless giggle-seizures we’d been warned about? It certainly looked as if he were having fun.

Forever six months. At the end of December 2009, when I was six months pregnant and sitting with my mom in the Amtrak waiting area at Penn Station in New York, preparing to take a train to Philadelphia for a series of job interviews, we met a nine-month-old baby who was on his way to Boston with his grandmother. The baby looked enormous to me; I could not believe I would someday (
soon
, I reminded myself,
soon
, as I also felt enormous), have a person that big to prop on my hip and cart around like a living, squirming handbag wearing a diaper. I felt a cold panic spread over my body. My mom cooed at him and played peek-a-boo and made him giggle.
Well, of course,
I thought,
she knows what she’s doing. She’s a mom.
I was uncomfortably warm in a way-too-tight suit with the pants safety-pinned below my belly and a wool jacket with permanent underarm odor. Being pregnant was all about heat and odors, but I was too tired to do anything about it, and I knew that nobody was going to give me a job while I was pregnant, but I was going to take a train to the interview anyway. My mom flirted with the dark-haired baby for a little while longer until he grew tired of her and his grandmother waltzed him away to greet other admirers in the waiting area. Everybody loves a baby. “I love that age,” my mom said, sighing. “They’re just starting to talk and interact; they really become little people at nine months.” I remembered this during the days after Ronan’s diagnosis, when the doctors told us that all development essentially stalled out at six months before it began to unravel. Did that mean he would never even get a shot at being a little person? The thought made me want to hit my head against the wall, and sometimes I did just that.

Where would Ronan go? Certitudes had vanished. Nothing was solid. There was only my imagination, which was robust and strong and made to go the distance, to build and rebuild those “horizons of meaning” that the philosopher Hans-Georg Gadamer developed in the nineteenth century. But was it enough? I imagined Ronan treading water that shifted from dark blue to New Mexico–sky impossible. There’s no color like that in the crayon box: blue to ink black to the wildly contented blue of the sea one summer along the west coast of Ireland, when I felt as if I were vacationing in the Bahamas—warm breezes, sweet sun-drenched grass, fat bees drunk with summer tumbling past our picnic blanket. The idea of staying in one place, of getting stuck, made me sad, but why?
Don’t get stuck!
we tell one another.
Erase those old tapes about who you are and move on!
But to where? And to what? And why?

Why was I constantly unpacking the nature of happiness and the possibilities of Ronan’s knowledge whenever I was with him? Was it his outsider existence that gave rise to these circular thoughts?
The Magic Mountain,
a thick, terrific book full of circular thoughts, seemed like a place to start searching for some answers.

A character in Thomas Mann’s epic novel observes that, “Ah yes, life
is
dying—there’s no sense in trying to sugarcoat it.” Whenever I sent an e-mail or a text or made a phone call to one of the dragon moms they were able to sketch the quick progress of their child’s life and death in a neat paragraph, a quick history, a summing up of care choices, medications, life spans. But the cracks in these stories were easy to find; apply enough pressure and the narrative fell apart—I’d yet to meet or speak with the parent of a dead child who, even decades later, didn’t cry when talking about his or her son or daughter. No wrenching sobs, just quiet, necessary tears that fell while the voice stayed steady and the narrative continued. One can recite the testimonial of a war experience in a calm voice, perhaps, but nobody can control what the body knows, what it needs to release. Grief, I realized, is watery and trembling and always exists beneath the surface of real life; just a gentle touch and it’s spilling everywhere. The seams are easy, too easy, to split. And that’s when the real stories come out; the memories about “gee,” or a certain pair of pajamas or a favorite food or toy. These babies lived lives that could not be easily recalled, but what did that mean, to quantify or render a life?

What was life? No one knew. It was aware of itself the moment it became life, that much was certain—and yet did not know what it was. Consciousness, as sensitivity to stimuli, was undoubtedly aroused to some extent at even the lowest, most undeveloped stages of its occurrence; it was impossible to tie the emergence of consciousness to any particular point in life’s general or individual history—to link it, for instance, to the presence of a nervous system. The lowest animals had no nervous systems, let alone a cerebral cortex, and yet no one dared deny that they were capable of responding to stimuli. And you could anesthetize life, life itself, not just the special organs capable of the response that informs life, not just the nerves. You could temporarily suspend the responses of every speck of living matter, in both the plant and animal kingdoms, narcotize eggs and sperms with chloroform, chloral hydrate, or morphine. Consciousness of self was an inherent function of matter once it was organized as life, and if that function was enhanced it turned against the organism that bore it, strove to fathom and explain the very phenomenon that produced it, a hope-filled and hopeless striving of life to comprehend itself, as if nature were rummaging to find itself in itself—ultimately to no avail, since nature cannot be reduced to comprehension, nor in the end can life listen to itself. (From
The Magic Mountain
)

Mann, of course, in this very serious-sounding, vaguely scientific passage, was influenced by Hegel’s phenomenological theories: things become what they are during the process of becoming what they are; in other words, all life forms are forged in the fire of a never-ending, tumbling-forward-and-behind-and-sideways process. They don’t just land at an end point, whole and complete, and they never stop changing. They never
arrive
. More than a decade ago I sat in a sun-filled classroom at Harvard and wrangled grumpily with Hegel and what his elaborate system of thinking, which required whole pages of charts and graphs to sort out, had to do with theology, life, or really anything at all.
Didn’t this dude have anything else to do with his
time?
I wondered, and waited impatiently for us to get to Nietzsche in the course schedule, the guy who’d famously announced that God was dead, the cool-grunge hipster philosopher of the nineteenth century who wrote in an exuberant, fascinating prose style. Anyone who has ever trudged through one of Hegel’s muddy, dense passages of prose may understand this frustration.

And yet Mann and Hegel were onto something. What the hell is life? (
That, finally, is all it means to be alive: to be able to die.—
J. M. Coetzee.) How do we recognize it, protect it and, finally, as we are all asked (that is, forced to do), let it go? Can it just be life without knowledge of its lifeness? And, in our case, mine and Rick’s, how would we let life go for someone else, for our favorite person, for our child, for our
baby
?

Rick and I had this ridiculous conversation on a regular basis:

“He’s the best little boy, the sweetest little dude. He’s a baby!”

“He’s the best baby in the world, the best and sweetest boy.”

“Best baby.”

“Our baby, the only baby.”

“We love our little guy, the little baby.”

On and on it went like this, back and forth between the two of us, day after day, and when we were not actually having this conversation with each other, we were having it with ourselves. And the thing is, it was absolutely true. He was ours; he was the best. It was also about all we could say, because he would always be a baby, but would he ever really get to
live?

What can be learned from a dying baby?

In the spring of 2011, not long after Ronan’s first birthday, a news story made headlines around the world—a story that forced me to examine these quality-of-life questions more deliberately and deeply. Father Pavone was a priest who helped facilitate the transfer of Baby Joseph, a terminally ill baby, from a Canadian hospital to a medical center in St. Louis so that Joseph could receive additional treatment to prolong his life. Joseph’s Canadian doctors had refused to treat him because he was in a vegetative state. Father Pavone stated that the child, the baby, provided a “teaching moment for our whole culture” about the value of life. I couldn’t agree more, although I believe the issue may be less about
value
than it is about
quality.

This was not just semantics. The quick degeneration of Ronan’s brain tissue due to the lack of hex-A, a crucial enzyme, meant that all his bodily systems would be irrevocably compromised by the age of two, resulting in a gradual disconnect from the faculties that make life livable: movement, vision, taste, touch, sound. Although Baby Joseph’s illness (and he is always a Baby, not just a Joseph) was never specifically named, it didn’t sound dissimilar to Tay-Sachs in terms of severity and resistance to known treatments. If only Ronan’s body was devastated but his brain was intact, if he had the smallest foothold in any mental process or physical experience, would Rick and I do everything possible to keep him alive? Absolutely. Even now we could make choices, as Joseph’s parents and their posse of priests did, to keep his heart beating, but our son—as we know him, as a person—would be gone. After exhaustive, wrenching conversations Rick and I decided to believe (and belief is always a decision; Father Pavone got that part right) that using extraordinary measures to maintain Ronan’s future life in a vegetative state with no possibility of recovery would constitute cruelty. As Ronan’s parents, we understood that our obligations to him were to maintain his quality of life, and to help him die with dignity, without pain, and in our home.
Life is about living,
we said, playing with Baby Ronan, our baby, the little baby, our little dude.
Yes, yes. We’re making the right choice.
But what did that mean,
life is about living
? What did it mean
really
? Was I saying that when my child could no longer
think,
that he was no longer a person? That, too, was a complicated question.

There were many levels to Baby Joseph’s case, and that the courts should not be able to decide the fate of any child with parents to speak for him or her seems obvious. I empathized with Baby Joseph’s parents in a raw and gut-wrenching way. Losing a child (or, in our case, preparing for that loss over the course of several years) is sheer hell; I disagreed with Joseph’s parents—without judging them—while simultaneously indicting a culture determined to deny death to the point of grasping at any methods that might prolong “life” without an in-depth exploration as to what it is we’re talking about.