The Still Point Of The Turning World (5 page)

5

J
anuary felt endless, lifted from a Victorian novel: I was hysterical, inconsolable, stricken. I had the urge to run down the street in pajamas (for lack of a period nightgown) tearing at my hair and wailing. Sometimes I was afraid to leave the house and would cower with Ronan in a corner like some crazy mama bear, as if Tay-Sachs were a predator or an intruder from whom I might protect him. I did, on some days, feel like Gilgamesh, the grieving man “howling bitterly” who cannot accept his grief at the loss of his beloved friend. He laments and paces; “he tears and messes his rolls of hair.” He begs to be listened to: “Listen to me, Elders. Hear me out,
me . . .
An evil has risen up and robbed me.” On other days, I felt unaccountably, almost brutally, happy, as if existence had been pared down to singular moments between Ronan and me. I was living in this state, I think, of death-meets-life, buoyed by the knowledge of an abyss that was empty without being hopeless. Vaclav Havel described the unexpected and euphoric happiness he experienced in prison like this:

One is exhilarated, one has everything imaginable, one neither needs nor wants anything any longer—and yet simultaneously, it seems as though one had nothing, that one’s happiness were no more than a tragic mirage, with no purpose and leading nowhere. In short, the more wonderful the moment, the more clearly that telltale question arises: and then what? What more? What else? What next? What is to be done with it and what will come of it? It is . . . an experience of the finite . . . a glimpse into the abyss of the infinite, of uncertainty, of mystery. There is simply nowhere else to go—except into emptiness, into the abyss itself.

The abyss, yes. (I remembered that line from a Jane Kenyon poem about the death of her father: “That’s why babies howl;
this
is the abyss.”) But our family still had details to sort out. Eventually we started to think, strategize and adjust. Instead of investigating future day care and preschool options, Rick and I drove to Albuquerque for appointments with neurologists and geneticists, all of whom told us that there was nothing they could do to save our son and very little they could do to ease his suffering. This was not easy for doctors to say, as the medical establishment is geared toward protecting the future. For doctors, saving lives means extending lives. That’s their job. By contrast, on that same day when we met with a pediatric hospice care team, the conversation was about quality of life, not quantity. There were dreadful, odious, unimaginable decisions to be discussed, to be made. Which seizure medications might be effective, and in what combinations? When Ronan could no longer swallow, would we decide to place a feeding tube no matter how his other faculties had been affected, or would we let nature take its course? At each stage of potential intervention, hospice care asks: “What does it lead to? What is it for?” Would we know how to listen to what Ronan’s body was telling us? Or would we just desperately cling to our son?

I talked more with other moms of Tay-Sachs children, cobbling together a tentative care plan for Ronan and discussing avenues for advocacy, research and support for families. These mighty, indefatigable dragon moms gave me all the grim details, compassionately but matter-of-factly, and without hesitation or pity. “Things have a habit of changing around their birthdays,” they warned. The traditional milestones turned on their heads. We no longer wondered “What if he starts talking today?” but “What if he stops smiling, cooing?” We didn’t ask “I wonder when he’ll take his first step,” but “I wonder when he’ll stop moving completely.” A daily list of tyrannical what-ifs. What was supposed to mean one thing suddenly meant something else entirely. Waiting for change felt like waiting to be punched in the face, kicked in the gut, stretched out on some rusty medieval rack to be tortured slowly.

An elaborate taxonomy of transformation exists in our culture. Change your body, change your life, take charge of your financial future, stop wrinkles. Americans are driven by future-directed resolutions. We thrive on the idea of change, the business of ambition. My own childhood fantasy of transformation was just a more extreme variation on this theme. But Ronan would never speak, or write, or do much with his hands besides spin the little lizard inside the plastic egg on his bouncer, turn the pages of a soft book and bat the chimes of his dragon toy. He had, literally, no future. How did we understand the meaning and purpose of Ronan’s life in a society—like most societies—that was dedicated to progress and achievement, where going back was synonymous with failure? Where the longer life was seen as the more successful one, the one worth fighting for? If you were unable to tell your own story, did it mean you didn’t have one to tell?

We needed new words and a new language, and it could be created only through discourse, which could only happen between people using language to make their experiences known. Enter art in its purest form: mucking up meaning. Disrupting our worldview. Redescribing story, Ronan’s story—his path, his myth—could blaze new pathways of understanding not only for me but for others.

•   •   •

As a young teenager in the late 1980s I was a counselor at an Easter Seals camp in Colorado. I remember so well watching one of the campers—she was about ten or eleven—sit up on a horse for the first time. I can’t remember her specific disability, although I think it was spina bifida, but I do remember there were supports on the horse’s saddle, and that she was so excited that she had been unable to eat breakfast. When she was finally situated, the horse trainer and I stepped away. She didn’t move. She stared into the distance, completely still.

“You can tell her to go and she will, or I can nudge her,” said the trainer, making a move toward the horse.

“No!” the girl shouted. “Don’t!” The horse neighed and stomped a hoof lightly but stayed where she was. “I want to stay just like this. I want to be this. I want to be right here.
I am the horse
.” We looked at her. “I’ll move when I want to,” she told us.

And so she sat. For about twenty minutes. Each kid was only allotted thirty minutes, and I was getting worried that she’d regret not having gone somewhere, but she looked so peaceful that I didn’t want to push her. We’d also had a bit of a wrangle getting ready that morning and she was still grumpy with me, so I was afraid that if I suggested a particular course of action, she would choose the opposite. I stayed quiet. Eventually she did take the horse on a slow trot around the corral, just one loop, and she was perfectly happy. She refused to let anyone else make that leap from experience to meaning on her behalf, and she was absolutely right to be suspicious of our motives. As I rocked Ronan to sleep that night, I thanked her for reminding me, years later, that new, authentic narratives, real stories, were possible to create, to recognize, and finally, to share.

6

How can I describe my emotions at this catastrophe, or how delineate the wretch whom with such infinite pains and care I had endeavored to form? The different accidents of life are not so changeable as the feelings of human nature. I had worked hard for nearly two years, for the sole purpose of infusing life into an inanimate object. For this I had deprived myself of rest and health. I had desired with an ardour that far exceeded moderation; but now that I had finished, the beauty of my dream vanished, and breathless horror and disgust filled my heart. Unable to endure the aspect of the being I had created, I rushed out of the room.

—
Mary Shelley,
Frankenstein

R
onan and I began the first day in February watching the room fill with light as snow crystals melted against the living room window. The blue spruce in front of the house across the street was slowly covered in white, as if it were aging as we stood there. I thought,
Ronan will never be an old man
.
Next month he’ll be one year old, and then he might be two, but will he ever be three?
I tried to imagine Ronan as an old man, sitting in a recliner, a cup of tea in a saucer on a small table, snoozing in front of a Red Sox game, retired and worn out, his life a road he had run well, stretching out full and dark behind him. The image made me want to weep.
What if he had lived to a ripe old age and then gotten some terrible cancer?
I thought in a surreal, hopeful way. In the entire United States, only a dozen or so babies are diagnosed with Tay-Sachs each year. If Ronan would have eventually died of some rare and painful cancer, then maybe Tay-Sachs was a merciful way to go, because he didn’t know what was happening to him and therefore he could not be afraid. This was clearly the logic of the desperate and the bereaved. “Gee,” Ronan said, his single word. I put him in his bouncer. He batted at the blue frog on one side and then took aim at the red bird on the other, like a boxer hitting a slow bag instead of a speed bag, like a mellow DJ spinning tunes. His bouncing was already growing less vigorous, and we needed to pad the front and sides of the seat to keep him from pitching forward. A few months later, the bouncer disappeared, replaced with the swing he used to sleep in as a newborn.

I graded papers as Ronan bounced in slow motion and then I asked him, “Are you ready to start your baby day?” He was; there were textured pillows to touch and hair to pull; there were cloth books to drool on and yoga poses to be done (happy baby). I lifted him from the bouncer and sat him on my stomach. He laughed and lunged at my face. Noses were a particular favorite, although the holes in ears were also appreciated, and lips were an endless source of amusement. Fingers? Amazing. For one long moment he soberly studied me—he was always a philosophical dude—before breaking into a wide, wet smile that was more like a silent laugh. He would have been a great silent film star.

How long will Ronan be able to do happy baby?
I wondered as he struck his pose on the changing table. In less than a year, Ronan would be blind. I could hardly imagine it—the light going out of his eyes but his heart beating on. He would have started having seizures that required medication. That, too, filled me with panic and dread. These images, and many others, kept jutting into my mind, toppling me, together with these lines from Gerard Manley Hopkins’s poem about grief:
O the mind, mind has mountains; cliffs of fall / frightful, sheer, no-man-fathomed.

In the days following his diagnosis (“Babies with Tay-Sachs can live three years with good care,” I kept hearing the doctor intone), I was afraid to be alone with Ronan, terrified of the sadness and helplessness, the anger and fear that touching his head or his hands or his face provoked in me, these jagged feelings that punctured my day and made it difficult to do activities as simple as boiling water for tea, or pulling a few squares of toilet paper off the roll, thinking
Ronan will never be able to do anything as basic as this.
But on that first February morning, after his nap, I held Ronan without crying and waltzed him around the room without catapulting into the future. In an illogical way, this felt like progress.

Meanwhile, we were growing into Ronan’s terminal diagnosis and its attendant jargon. “Will you insert a
feeding tube
when he can no longer eat?” “What are your plans for his
end-of-life
care?” “Are you open to interventions like a
chest vest
or a
suction machine
to assist with
secretion control
when Ronan can no longer manage on his own?” Rick and I knew that how we responded to these monstrous, seemingly impossible but necessary questions would determine not only the course but the end of our son’s life. We sat stone-faced in the pediatrician’s office, understanding that we would never be the same. We felt grotesque and out of place in our own lives. You can, for just a moment, fuse grief like a bone, but the memory of the ability to bend lingers inside, like an itch running in the blood, just beneath the skin: relief is always only temporary. Grief, we understood, would now hijack a part of our day for the rest of our lives, sneaking in, making the world momentarily stop, every day, forever.

And I kept remembering moments from my pregnancy. In November 2010 I was at Yaddo, an artist’s colony in upstate New York, feverishly trying to finish the draft of a novel before Ronan was born. I was frantic, believing everybody’s warnings that “you’ll never have time to do anything once you have kids.” (This turned out, of course, to be absolutely false and just another silly thing people say, such as “Enjoy it now!” or “It’s only downhill from here” when one is pregnant and buying groceries at the store, filling the car with gas, et cetera.) I went a little feral during that time, typing away in my writing room—a sun porch clearly better suited for summer residents, with three walls made entirely of floor-to-ceiling windows. Until I finally admitted that the austerity of the cold was not assisting my creative process and decided to ask for a space heater from the kind caretaker who resembled Walt Whitman, I wore long underwear beneath corduroys and an oversized wool sweater, my heavy down coat and pink fingerless gloves (perfect to type in!) knitted by my friend Tara.

One morning, just before dawn, when I hadn’t spoken to another person in nearly three days, hadn’t eaten a single meal that did not involve peanut butter, and hadn’t slept more than two hours a night in nearly a week but instead had restless, almost violent naps full of vivid and labyrinthine dreams, I felt my stomach muscles begin to shake and then
move apart
. My ribs started to ache; when I touched them they were electric, ropy wires of vibrating bone, and they, too, were on the move. Muscles cracking, bones stretching. Ronan. The two of us were alone in that room; you probably could have seen the lights in our windows from a long way off.

A few skinny deer nosed around in the scattering of snow outside my window, unimpressed with my artistic ambitions. The trees were cocooned in ice. A terrified-looking squirrel slid ungracefully down a glassy branch and then scurried out of sight. I could see lights on in the house across the road; other early risers or still-awake night owls were up and writing. Ronan kept kicking and elbowing and I felt my stomach swell beneath my palms. Ronan making himself known, taking up a bit more space, stretching out the tight trampoline of my midsection.
Here I am.
I remember saying out loud, “I see you.” And later, I did. Checking my e-mail before dinner, I saw that Rick had sent me the digital photograph of our 3-D ultrasound results. I took a breath before I opened the file. There he was, our little Zoat, as we had already nicknamed him, with a face that looked as if it were still being molded and shaped, a baby in process, claylike and soft and sepia-toned. He looked, frankly, like a slightly misshapen cat in midmeow. But there was a clear nose, eyes that looked squeezed shut, the thin angle of a hand near his mouth. I looked down at my stomach. How had the clay changed from that image to this moment? Had those little webby hands I saw on the screen been pushing at my rib cage? What new part had been stitched together? Another resident was sitting next to me when I gasped and said, “Look! That’s my son! He looks like a malformed cat! Isn’t he cute?” She craned her neck to get a view of my screen. “Wow,” she said, and put a hand on my shoulder. “Thanks for showing me this. I’ll never forget it.”
Me, neither,
I thought. I could hardly believe he was mine.

At Yaddo I reread Mary Shelley’s
Frankenstein,
one of the only books on the communal shelves that interested me. Sitting in my cold glass room I found it just as creepy and disturbing and wonderfully melodramatic as I had almost two decades before.

Some speculation surrounds the origin of Shelley’s idea for her story of a “modern Prometheus.” She was obviously familiar with the Greek myth, and the book’s epigraph is from
Paradise Lost,
but I like to imagine that the initial creative spark was a bit more complicated. Mary Shelley’s mother, Mary Wollstonecraft, author of the hugely influential early feminist text
A Vindication of the Rights of Woman,
died giving birth to her daughter. That itself is a kind of ghost story, a nightmare tale. And Mary Shelley would not be immune to her own private horrors surrounding creation.

While summering in Geneva, Mary and her friends experienced a weird burst of freakishly cold and nasty weather. As legend has it, in order to pass the time (no
Real Housewives of Zurich
or
French Riviera Shore
for these astute literary minds; they had to make do with imagination!), they sat inside around the fire and read one another German ghost stories, and then they each agreed to write their own story. Mary, eighteen years old, was the only one who finished hers. It was published anonymously the following year, in 1818.

I imagined Mary (Mary Godwin at the time) chilling out by the fire with her lover, Percy Shelley, Lord Byron and his pregnant lover, Claire, in odd summer weather described politely in some accounts as “ungenial.” The seasons have gotten confused, and this brainy group is fascinated with current scientific attempts to “animate” dead matter—a movement called, appropriately, “galvanism”—and from this convergence of factors the urge to write ghost stories springs. In later accounts of the origin of her story, Mary claimed to have written
Frankenstein
in a “waking dream.” I had plenty of those at Yaddo. Dreams in which falling rain became thick ropes of hair, then rubber, then iron bars.

Dr. Frankenstein, too, creates at a feverish clip, although he knew very little about what he was doing—with the brain, with the body, with the changes of his own heart and mind after he created his being, although at the beginning of the book he feels like a master of the universe, the smartest man in any room. Frankenstein is strenuously ambitious, obsessed with science and creating “natural wonder.” He beavers away at his creation, literally stitching him together (and here Mary
must
have been thinking of the psalmist who thanks God for being “fearfully and wonderfully made”). But instead, the monster looks funny. This experimentation with “the unhallowed arts” did not work out the way he’d planned. The monster is not baby cute. He has yellow skin and bulging veins and is twice the size of a normal man. Frankenstein flees from him, frightened and horrified.

The rest of the book is a dramatic caper complete with Dickensian moments of coincidence in the plot, with the creator actively seeking to destroy his creation and vice versa. An innocent child is murdered and the wrong person is blamed. Frankenstein falls sick, is nursed back to health, and is eventually imprisoned, picking up a long-suffering wife along the way. He stumbles into much of this trouble in part because he refuses to listen to his creation, who is pursuing him—initially, at least—with a single, relatively simple goal: to be loved and acknowledged. The monster, who is never given a name but is identified in the text as “wench” or “it” or other equally pleasant monikers, learns about human love by sitting in the woods, literally set apart, watching a human family giving and receiving tenderness, experiencing grief and anger and joy and forgiveness, moving through various stages of life and relationship. When he finally reaches out to them in the spirit of human connection, he is violently and mercilessly rejected. Hurt, alone and super pissed off, he heads out with a new mission: to find his creator and then kick his ass for abandoning him in a world where he finds only rejection.

I had a complicated relationship with the book when I first read it in junior high school English class. I identified with the characters and the emotions in the book, but I was also deeply uncomfortable that I identified more closely with the monster than with Frankenstein. I was the new kid in a new school in a new state. Each month we drove six hours to another state, where I had adjustments made to a wooden leg, a clunky contraption that leaked and creaked and gave me disgusting sores that were sometimes so painful that I had to grit my teeth when I walked to and from my locker between classes. I was poked and prodded by a creepy prosthetist whose skin reminded me of a wax statue, and then in the hospital I was X-rayed and examined and sized up. The process felt monstrous and made me feel freaky. (Going through TSA checks each time I fly is not a dissimilar experience.)

We also happened to be reading
Frankenstein
during the basketball section of gym class. I could not run then, but I had to take gym in order to graduate, so the teacher devised a brilliant solution: at the end of every session, I would be called onto the court, where I would stand in the free throw lane, a little bit unstable—my artificial feet were literally foam blocks then—as the rest of the class threw balls to me, one by one, and collectively counted how many I could then sink. I spent thirty minutes sitting on the bleachers, shivering with anticipation as I prepared for this task, trying to imagine myself out on the court, nailing twenty perfect free throws:
swish, swish, swish.
As it turned out, I did sink a lot of those balls. In the late 1950s my dad was a high school all-star player at his high school in rural Illinois and he often shot hoops with me in the driveway of our house. My mom won the free throw competition at her fiftieth high school reunion, which was also my father’s. I always was a good shot. But the anxiety of this experience—of being different, set apart—has never fully left me.