The Still Point Of The Turning World (14 page)

Overwhelmed by notions of karma, I wandered to the bookcase and thought
Poets! Help me!
I found this poem by my friend Phil Pardi, itself from a book of meditations:

D
RINKING WITH
M
Y
F
ATHER IN
L
ONDON

With his mate, Wilfred, who was dying

I discussed ornithology as best I could

Given the circumstances, my father flushed

And silent, a second pint before me,

My fish and chips not yet in sight.

Condensation covered the windows

and in the corner a couple played

tic-tac-toe with their fingers.

Behind it all, convincingly, the rain fell.

The mystery
, Wilfred was saying,
isn’t flight.

Flight is easy,
he says, lifting his cap,
but

landing—
he tosses it at the coat rack—

landing is the miracle
. Would you believe

thirty feet away the cap hits

and softly takes in the one bare peg?

Would you believe no one but me notices?

I’d like to come back as a bird,

Wilfred says, both hands on the glass

before him, and here my father

comes to life.
You already

were a bird once,

Wilfred,
he says
, next time

next time you get to be

the whole damn flock.

What did I believe? I believed that I was sad, and would always be sad. Beyond that, who knew? My belief was shortsighted and myopic, as most beliefs are.

“Terror breeds apocalyptic visions,” a religion professor once told me when we were discussing the origins of the Book of Revelation. No shit. It is impossible to believe in the unbelievable just to find a way of moving through a difficult experience—or even just a single day. But I’ve always believed in the power of stories to make life cohere, to create a necessary order around us, and this can, in turn, help us fully live. And all of the notions of the afterlife are, of course, stories. People may ardently believe in them, as incredulous as they are to nonbelievers, but the truth is that nobody has come back to verify the facts of anybody’s vision of the afterlife. No empirical evidence exists. Nobody knows anything for sure. Not Saint Paul, not the earliest translators of the Bible, not the redactors of the Bible itself, not even Jesus, who did most of his talking about the afterlife and what it meant and how we would get there before he died. What happened to him afterward, in that beyond, is purely conjecture. We can only believe in what we’ve come to accept as truth. No abstract notions of morality can effectively guide us. We only have stories. In the song “Guided by Wire,” Neko Case sings:
The voices that did comfort me are furthest from my
sanity / Have come from places I have never seen
/ Even in my darkest recollection / There was someone
singing my life back to me.
In my friend Barbara’s letter from around this time she reminded me of the scene in one of Philip Pullman’s novels when Lyra must tell stories in order to set the trapped souls free, and how the experience nearly kills her. In Buddhism we’re invited to see ourselves as part of the natural cycle of birth, aging and dying. Stories: they’re all we’ve got.

But all the old stories failed me. (I thought of the hymn “The Old, Old Story”:
I love to tell the
story /
’twill
be
my theme in glory / to tell the old, old
story / of Jesus and his love.
) Belief in anything seemed impossible. One morning I woke up while it was still dark outside, misread my alarm clock, and found myself convinced that the sun was not going to rise. It was three in the afternoon, the world was ending, and I felt completely relieved. My private apocalypse had finally spilled over into the larger world. I wouldn’t have to explain a single element of my personal tragedy. Everyone else would be having one as well.
Bad karma,
I heard a voice inside of me say.
You’ve got to give love to get love!

The notion of karma troubled me because it felt like something real to hook into and wasn’t attached to a unique, gendered deity to whom I was supposed to feel indebted for my life. It felt the most true and yet it was the most problematic because it seemed the most closely linked to retribution, to punishment, even if it was not inflicted by a god or a godlike being.

Many of the healers and Buddhists and others I spoke to after Ronan’s diagnosis tried to soft-pedal karma, but they all insisted that we benefit and suffer from karmic motion. My initial reaction to the idea that Ronan’s karmic fate was the reason he would live for only a few years, after regressing into a vegetative state, was to look at his chubby baby face and chubby baby thighs and feel angry and helpless. How ludicrous. Why give such a load to a baby? Why dump it on a baby’s parents?

If the vague karmic inferences angered me, the specific Christian forecasting scared me.

In the fall before Ronan was diagnosed, I was walking with my friend Rob on the arroyo path near his house in Santa Fe when a woman passed us, curious about the baby contentedly snoozing in the front pack. After I told her Ronan’s name she repeated it and asked me if I’d had him baptized yet. I said no and walked on, making light of it. We passed her again: she asked again about the baptism.
What about Ronan
?
she asked. Rob told her, quite rightly, that she was being rude (he said it in the nicest way), but days after Ronan’s diagnosis I found myself haunted by this question. Was that woman some kind of special seer who knew that my baby was sick long before I did and was giving me solid advice about how to help him? What
about
Ronan? Had I failed my son by not having him baptized? Had I failed to protect him somehow by not assuring his safe passage through purgatory and into heaven with all the other doomed babies? Or is baptism, as Simone Weil believed, just a big bowl of dangerous groupthink? When Rick and I took Infant Care 1, the teacher was sure to remind us that
a baby can drown in just an inch of water.
Is the baptismal font full of enough water for a person—not just a baby—to drown in?

Several years ago I was walking Emily’s son Coll to his school in south London. A fearless kid, he wanted to run ahead and promised to stop and wait for me at the corner before crossing the street. He assured me several times that this would be perfectly acceptable to his parents. I was pushing his sister Anita in the stroller, watching Coll’s white-blond hair flapping in the wind, dust flying up from the soles of his shoes, buses and cars roaring past. Nervous, I frantically called him back to me. “If it’s okay with you, I would like it if you’d walk next to me,” I said, trying to mask the terror so evident on my face. (When he was just weeks old I took him for a brief walk in the stroller and didn’t take one breath the entire time.) He was annoyed, but he patiently walked with us to the schoolyard, where he finally turned to me and said, “You can leave me now.” I panicked. Could I? How did I know what was going to greet him on the jungle gym, in the classroom? Who can say that my protectiveness on the street meant anything at all? Being vigilant in one potentially dangerous moment was no safeguard against future trouble. Anything could happen at any time. Some wounding comment might be made and never forgotten, some maniacal swing from the monkey bars might end in a life-threatening free fall. No, I simply could not leave him at this school, where physical and emotional disaster lurked in every kid-occupied corner. I looked around for the teacher, prepared to tell her that I was taking Coll home, and trying to think of a plausible reason why this would be necessary. But before I could find a single adult he had run off, happy to be free of me, and I turned the stroller around and headed back to the house, Anita chattering along as we bumped across the park.

Em’s garden faces the schoolyard of the primary school, and all afternoon I tried to comfort myself with the roar and flow of children playing beyond the wall. It’s a scary word, “beyond.” It looms. Like a big stretch of rocky, unseen road you are asked to navigate in the dark without shoes or a flashlight. But I heard laughter and bouncing balls. Happy shouting that was vigorous without sounding panicked. No sounds of disaster, no shrieks or gasps. I assured myself that someone would be looking out for him, that he’d be fine. Still, I was relieved when he returned home. It felt like a small miracle, and I couldn’t imagine reenacting it each day.
How do parents do this?
I wondered.

How do we know when to leave people behind and when to send them off? How do we ever know where we’re sending them? As a parent, I wanted to know what was waiting for my son at the end of his life; I wanted an inked scroll with an official stamp that would tell me what would happen, and I wanted to get him to the end of his short life with dignity. How will he be ushered to the other side? (“
You pressed a coin into his palm and stepped across the water”—
Dana Levin, “Styx.”) I wanted to enjoy each moment he had in this life, which meant I had to learn to feel less tortured and less afraid. Otherwise, I would not be able to mother Ronan the way he deserved, and I didn’t have much time to sort it out. I fed my son squash and beans and pureed pumpkin. I hiked with him in the Sangre de Cristo Mountains. I drove with him to Wyoming to see my parents. Each time we were together, doing anything, I thought:
If there is a heaven, could we do this all over again? Could all these moments repeat on an endless loop and last forever?

Rick and I were firm about our philosophy-of-care approach: minimal intervention, maximum life experience. But when the body doesn’t make the decision for us, how do we know when to leave one another? How do we know when to let go? How would I know what to do in that moment when a decision is required of me? What would be my guide? Motherly instinct, whatever that is? The harshness of scientific fact? What spoke to me in Phil’s poem is the implication that any afterlife we imagine is so limited that the only thing we can do is let go of the hat and trust that it will land. We might never see it; we might be the only ones who ever do. These questions kept me awake at night, especially in the spring, with all of its false promises of renewal and birth and growth. I stood over Ronan’s crib and watched him sleeping and thought,
Here he is, here he is, for now, right here.
I would stumble back to bed, try to sleep, sit up and think, as if someone had shouted in my ear: THEN WHAT?

Nobody gets a free pass. The stories I heard from some of the other Tay-Sachs parents absolutely confirmed this. Just because you watch your child die does not mean you won’t shepherd your parents through a debilitating illness, or that you won’t get cancer, or that your husband won’t die in a car crash, or that you won’t emerge a bitter and broken person. Although my great fear while I was pregnant was that they’d gotten it all wrong and my birth defect was genetic, part of me believed that I’d earned a bit of good fortune, that it was my turn to be visited by some grace. But grace is more fickle than luck; sometimes you need a magnifying glass to see it. Sometimes you need super powers. The only guide I had during my experience of parenting Ronan was imagination.

16

L
iving in the midst of the knowledge of Ronan’s inevitable death forced me into a new kind of living. It was uncomfortable, a heavy and daily mental wade through some pretty difficult thoughts, but it was qualitatively different from the life I was living before—like a dream life, an alternative existence. It was a life of heightened presence and constant mourning, an activity of which I became a scientist. Each day I picked apart my grief with a little knife; I combed through it; I boiled it in petri dishes and tried to blow it up. I sprinkled it with gas and lit a match, watched it burn, put out the fire. It always came back, tenacious and colorful, jumping around and shouting. Each day it presented a new substance to tinker with—sticky, soft, gooey, slimy, rough. Each day it baffled. Sometimes it smiled and laughed. Managing grief was weirdly playful, the way science and art should be: experimentation, turning down new roads, taking the cue from what came before and asking always why and what if and what next? I didn’t like the results of my carefully devised experiments, all of which were about ridding myself of grief and trying to simply be blazingly happy in the moments remaining with Ronan. The results of my labor were unsatisfactory. I gave myself a Big Fat F for Grief Science class, scrawled in red pen at the top of the paper. Grief is too much work; you’ll never get the grade you think you deserve.

Snuggling up to my son meant snuggling up to death, I’d think, listening to “Ronan Radio” on the baby monitor and begging Xanax to provide some relief. Death—that “serial killer,” as the poet Dana Levin calls it and that we all pretend we can avoid, outsex, outlove, outachieve, work out, cast off, deny deny deny. Ronan’s body was already lost and yet we clung to him. What dreams did he dream in that fizzing, intricate brain that was ticking down each moment, counting them out like cards for a game on a table, like birds landing one by one on a wire? I tossed and turned, listening for some terrifying noise on the baby monitor. What if it would all just end today? I’d sit up when I heard a squeak, a sigh, and then the usual deep breathing. Tay-Sachs: the serial killer that takes every moment, one at a time, and unravels it to the beginning, to a scrap of wool that lifts easily in the wind and is shepherded to some unseen place. Lost.

In “The Mentor,” another Levin poem, two people turn together to conduct the “science of mourning.” This was my great project, mine and Rick’s. Two sad scientists putting their heads together the way we once put our son together.

When Ronan’s therapist came over on Friday, Good Friday, the first thing she said when she walked through the door was “Crazy wolf moon!” Was it? I had no idea.
I could be living on Mars,
I thought, where there is more than one moon or no moon or moons that move in and out of particular orbits at their moonish, lunar will. I didn’t know a thing about Mars. I rarely looked at the night sky anymore. “Pull yourself together,” I’d been told and also told myself. What would I pull together? Who was doing the pulling? If I yanked everything together, if I attempted to sweep up the bits and organize them into a whole or a shape or something fit to venture out into the world, I would either disintegrate or explode. Gathering of any kind felt dangerous. I did crave lunar landscapes, like the silvery, shining, pocked earth of Big Bend in West Texas, where from miles away you can see the tiny shadow a scraggly bush makes, knobby fingers stilled in midreach. A ravaged landscape that is unable, by its nature, to keep secrets. I once looked out over the desert in Israel from King Herod’s old house at the top of Masada and thought,
No way could David hide here.
In the distance the smallest rock cast a shadow, a little puddle of shade. No secrets, no games, just truth.

The holiday, Easter, which we celebrated only in a secular way (potlucks, chocolate, stuffed bunnies) seemed skeletal. The spring-ready trees were confused, limbs creaking and cold in a tail-end-of-winter breeze on a day when some people would be searching through gardens for Easter eggs and other treasures.
What will next Easter look like?
On a day that was supposed to be about beginnings, my mind had already sprinted to the ending.

How long will he be able
to eat? When will the seizures begin?
It was lonely being a scientist, even when you had a partner. We took our masks off first. Then our gloves. We took off our clothes and sat in hot cauldrons together, watching our little bowl of grief. We sliced it into strings. We chopped it up. We lit it on fire and ate it. We tied it like ribbons around our wrists and ankles, where it made curious tinkling, chiming sounds. We reasoned that the more dangerous we made things for ourselves, the greater the chance we might get the results we wanted.
Oh, when am I going to own my
mind again?
(Jane Kenyon, “Travel: After a Death”) Easter, like all holidays, was the enemy that year; it involved calculations.
When. If.
Rick and I returned to our stations, tossed our aprons to the floor (what good are these?), our fingers charred and minds ticking.
There must be something we
can do. There must be a solution.
Even a brilliant scientist could not make magic. How many Easter beginnings added up to an ending?

When I was growing up, my parents put together a fantastic Easter egg hunt. My mom must have been padding around in the garden before dawn in her slippers when I could hear my dad taking his shower in the bathroom that shared a wall with my bedroom, getting ready for church. It would be light but still early. We were supposed to have remained quiet and calm and contemplative between Good Friday and Easter morning, but this plan was usually interrupted by the excitement that an episode of
Knight Rider
created in my brother Andy and me on Friday night after the moody service, all dusty purple robes and shaded crosses and my dad’s voice speaking the Gospel story offstage, out of sight (and sometimes a bit melodramatically), a disembodied voice waving and swelling over the solemn crowd.

After a fragrant Sunday service with lilies stacked bloom to bloom on the altar in their pink and green and blue foiled pots and everyone in shining clothes and smiles, my brother and I were sent out into the yard at home to search for both the traditional dyed eggs as well as plastic eggs full of clues that would tell part of a story that led to the next plastic egg with the next written clue, another tiny scroll of paper, and finally we’d reach the treasure: a basket full of chocolate and presents, covered in ribbons and bows in pink and blue and yellow. Sometimes the baskets would be inside the dryer, a bathtub, the garage sink. Sometimes the clues made a rhyming poem, a limerick or just a silly little story.

Each day offered a new clue to Ronan’s unraveling, which went hand in hand with his growth. He lost his vision as his hair grew longer, a duck tail in the back and enough mop on the top to make a Mohawk with baby oil. He grew teeth that he didn’t use except to make him look slightly wolfish when he opened his mouth to eat mushy food. I looked at him carefully, wondering what changes I was missing. If I hovered over his crib and never closed my eyes, would I see his legs and fingers growing longer? What moments would I witness? Would the growth make a sound? He couldn’t move or crawl, but sometimes in the morning he’d be on the other side of the crib. How long did it take him to move that small amount and at what cost? What progressions, which in his case were actually regressions, could I track? Would I know when swallowing hurt him?
How would I know?
I looked and looked and looked like a mad scientist who hopes never to find what she is searching for. But looking is not the same as finding, which in turn is not the same as knowing. It’s a question of epistemology, it’s a question of what and how we know.

I once watched a snail move slowly across a road. The fingertip-sized face was shaped like a bull, two delicate horns like wet candy. The body was the color of the bright moon beginning to appear behind me in the summer sky. A little snail with a little slimy moon head, picking its way across the road with little pin ears in the dark and in the silence. How did it know the road would be empty? What did it hear? If it was a matter of life and death—a car or a hungry dog approaching—could a snail sprint? How far could it see? What was a horizon for a snail? If Ronan’s brain couldn’t flip the image, did that mean he saw everything upside down?

We know that all of our sensory experiences cry out for interpretation. It’s how we
are
in the world and how we understand
who
we are, our role, our place. It’s what makes us human, what makes us the animals that we are. This feeling=that reality.

When I was seven months pregnant and in Baltimore to give a speech at my friend Kaliq’s school, we saw a jellyfish exhibit at the aquarium. The precise and patient hitch and pull of these fibrous, filament-like “simple drifters” as they slide to the top of their tanks seemed as mysterious to me as the static hum of the many ultrasounds I’d had up to that point. Each week I was pregnant I watched and listened to Ronan’s heartbeat, glowing and insistent and pulsing in what looked like a pool of spilled, vibrating ink. There was something primal about the kicking in my stomach (the baby must move) and the jellyfish moving (they are compelled to move the way they do). What fascinated and repelled me about ultrasounds was the feeling of being turned inside out for examination and the shock I felt each time that heart beat its steady pulse into the quiet exam room, even though I knew it was going going going all the time. I always wondered:
what if it stops?
But I never expected to be alive the moment it did. What I wanted to say as I peered into Ronan’s crib was:
Wait. Not yet.
What I also wanted to say was:
Go. Go now before the suffering gets worse.
I kept remembering the jellyfish, and the way they offer the terrifying glimpse into the inner workings of what they are: things made completely visible and the most mysterious of all. Creatures living with their insides on their outsides.

I started to understand that grieving parents are like jellyfish. It’s a suspension of belief to get up in the morning, a plodding, creaturely insistence of the clichéd one foot in front of the other methodology of surviving this journey. Each day I felt compelled forward and onward, often against my will. What’s unsettling about jellyfish is that we see all the secrets of their bodies and they don’t care. We see right through them; we see their scaffolding, the details of their construction, and it does not matter to them, only to us, the lookers, the voyeurs, the witnesses.

I imagined the jellyfish spontaneously swarming to the top of their tank—without consciousness, without attachment or knowledge. I rolled through the grocery store with my floppy, beautiful boy and some days I wouldn’t have had it any other way because to wish otherwise would be to wish for another baby, which I did not. On other days I railed against this fact and wished I could pull a jellyfish from a tank and flesh out its mysteries, give it a spine and feet and all the necessary bones, make it walk on land, speak, explain, do the impossible.

Ronan loved the dark blue wrapping paper in his Easter baskets more than the gifts they accompanied. Taking advantage of his best sense, his hearing, the paper was noisy, and bright and bumpy, and although the crackles sometimes made him startle, as all noises did, he kept going for it, turning his head to have a look from the corner of his eye, where his vision was best. I tried, in these moments, as he reached out, to take a mental picture. Eventually he would no longer move; did I have to lose my memory of it, too? In these moments, and when I lingered at the edge of the crib watching him breathe, I felt bottomless with sadness, each breath a fall into a trap door, and I also felt absolutely, euphorically alive.

Spring. A new season, new weather, and yet on one afternoon I walked with Ronan on the path and watched stern pellets of snow, hard and round, melt against his face. I had to sweep one out of the corner of his eye as if it were a remnant of sleep. I watched snow catch on the new blossoms along the path, balance briefly, poise on the tips of cactus needles before rushing on, taken elsewhere by the wind, disappearing.

I opened the blinds of the front window to the sunlight. The street was empty and the house was quiet. My son was being destroyed, every minute of every day, by the lack of one stupid enzyme. What had not yet happened was already happening.