The Still Point Of The Turning World (7 page)

Ronan saw no other baby waiting in the wings. No pursuit. No desire. There was only, simply, happiness. For him, yes, but the situation was, of course, more complicated for me, his mother. “The hardest part, my dear,” my orthopedic surgeon wrote to me when I told him about Ronan’s diagnosis, “is to reconcile your heart.”

8

Affliction would not have this power without the element of chance contained by it.

—Simone Weil,
Waiting for God

A
t the beginning of March I received a copy of my medical records, faxed from Los Angeles, which included the entirety of my prenatal testing results. Looking at them, I felt physically ill. A thick stack of blurry ultrasounds, check-up sheets covered in acronyms, numbers divided by decimal points. Comments about amniotic fluid and the baby’s positioning, weight gain and blood test results. Illegible doctor’s notes. The results of my Tay-Sachs carrier screening test? NO MUTATION DETECTED. Standard prenatal screens detect only nine common mutations of the gene, those most common among the Ashkenazi Jewish population, but there are more than one hundred mutations and counting (this is explained in very small print beneath the results). Most kids with Tay-Sachs are now born to parents who didn’t know they had anything to worry about. The gene, in other words, is everywhere. Why in this person or that person? Why in one and not the other? My superrare mutation, found, to my great surprise, among those of Moroccan descent, was hard to find—elusive, slippery, and all this time it had been lurking, waiting. Here, in Ronan, was the great unveiling of what, if odds had been in our favor, I would have never known.

I had the test, so I had done my part in preventing this. (Relief.) Many of my friends didn’t even bother with prenatal testing—they simply trusted in the odds. Never having been one to believe that statistics were on my side (my own congenital birth defect is so very, very rare), I did everything to cover all the bases, get the results, to
know.
A genetic “test” now appeared to be about as foolproof as a weather prediction. (Rage.)

As soon as I learned I was pregnant I became obsessed with odds. I quickly ordered every prenatal test available to me, even those I was told, “based on my background,” were unnecessary, including the test for Tay-Sachs. I cut out caffeine, alcohol, diet soda (chemicals!) and refined sugar. I drank buckets of water.

One of my favorite poets, who was probably not thinking about genetics in the strictest sense, though she was absolutely thinking about survival in which genes play a significant, unavoidable part, wrote one of my favorite poems about the paper-thin concept of luck and what if and how do you know and what might have happened and coulda shoulda woulda. I read it as a hard-edged take on the idea of being blessed, and survival of the fittest, and other things people believe in or say or misinterpret, phrases we live by, mistake, and perhaps—who knows?—grow to understand.

Could Have

It could have happened.

It had to happen.

It happened earlier. Later.

Nearer. Farther off.

It happened, but not to you.

You were saved because you were the first.

You were saved because you were the last.

Alone. With others.

On the right. The left.

Because it was raining. Because of the shade.

Because the day was sunny.

You were in luck—there was a forest.

You were in luck—there were no trees.

You were in luck—a rake, a hook, a beam, a brake,

a jamb, a turn, a quarter inch, an instant.

You were in luck—just then a straw went floating by.

As a result, because, although, despite.

What would have happened if a hand, a foot,

within an inch, a hairsbreadth from

an unfortunate coincidence.

So you’re here? Still dizzy from another dodge,

close shave, reprieve?

One hole in the net and you slipped through?

I couldn’t be more shocked or speechless.

Listen,

how your heart pounds inside me.

—Wislawa Szymborska

Because, because. Why why why. The following week, after days of sunshine, we had day after day of snow—dry, chaotic flakes that fell in soft, twisting loops. The single plow in Santa Fe could not clear the roads and many of my classes were canceled. I was oddly disappointed. Going to work, having things to do, tasks, a show to run in the classroom was sometimes easier than staying at home. Even though I loved being with Ronan, it was also true that when I looked at him, I felt myself sliding into the place where crying would only dig a deeper, darker pit. Sometimes I would sit in my office after class and think
What if I just sat here for a moment and pretended to have a completely different life? What if I jumped out the window?
Everywhere I looked there were kids on sleds, kids peering out of windows with their chins propped in their hands, looking bored, kids bundled up and toddling with their parents through parking lots in bright jackets and playful hats, the sky white-gray and bottomless when it had once been a sparkling, peppy blue.

“He looks weaker,” I told Rick the morning of the snowstorm. “Floppy.”

“Really?” Rick took him from me and held him for a moment. “Hey, Zoat,” he said. He propped him in the corner of the minicouch. Ronan toppled forward a bit, then to the side, but no more than usual. “He looks the same to me,” Rick said, and picked him up again. My chest hurt, watching them. Part of the pain of Ronan’s diagnosis was the fear of what it would do to Rick, who fathered him beautifully, attentively, lovingly. His parenting approach was patient, soft but intense, earnest and honest and, above all, vigilant. I wished I could spare Rick the pain of his son’s loss. I wished I could spare myself.

Rick handed Ronan back to me, and as if to be sure that I knew he wasn’t so floppy yet, Ronan kicked me, lifted his head and let out his version of a yell—a long coo moving into a high-pitched sigh. We’d been reading (cautiously, and in little bits at a time) about how Tay-Sachs progresses, how our world would gradually, slowly, inevitably change, but not as we had expected or hoped. Ronan had already stopped rolling over and could no longer control his head. At night when we put him in his crib we turned him gently on his stomach. He no longer did happy baby. When I changed his diaper, I lifted him into the pose, hoping it still made him feel good. I rocked his hips from side to side and massaged the bottoms of his feet. But he was beginning to belong more to the disease and less to us, it seemed, less to himself or what he might have been if his other genetic material had gotten a chance to manifest itself.

In her achingly beautiful book
The Member of the Wedding
, Carson McCullers, through the character of Frankie, exquisitely renders the feeling of separation from the world, and what it feels like to understand that there is an inevitable end to belonging:

It was the year when Frankie thought about the world. And she did not see it as a round school globe, with the countries neat and different-colored. She thought of the world as huge and cracked and turning a thousand miles an hour.

Frankie understands that the world is grinding away from her every day. Moments are turning over, appearing and disappearing without her involvement or permission or knowledge, and they’ll keep turning after she’s gone. She is nothing but she is also everything, and this is so disorienting that she vacillates between never wanting to leave the hot and dirty little kitchen in her house and threatening to board a train and abandon her hometown for good. As the summer day cools into evening she sulks under trees and yells at her beloved cousin as she contemplates her limited options. She is itching to be out of her own skin; she can’t live inside the feeling, this uncertainty that she cannot name. She wants to be a member of her brother’s wedding, but she knows (and now she will never
not
know and it’s maddening, maddening) that no relationship—with a sibling or a parent or a friend or a child, or in a body—lasts forever. As I read the book again (for the tenth time? the twentieth?), it was the first time I understood it as a stunning, quiet, almost perfect portrait of grief. Sometimes I tried to literally kick out of my grief, scratch my way out of it, rock away from it, scream it away, cry it out, and I understood why people cut themselves, how it was possible to want to die, to just end it, because none of my grieving strategies provided any relief. You end up where you started, running along a gravel road in the dark as dust obscures your vision and crowds your lungs. Who knew where you were headed? The year of Ronan’s diagnosis was the year when I thought a lot about luck.

Although one of Ronan’s genes was later identified as one of the nine mutations common among the Ashkenazi Jewish population (Rick’s), after his DNA was sequenced, another very rare but identifiable gene was discovered—one associated with those of Moroccan heritage. I was expecting Irish, even Jewish. A part of my family is German, so the latter seemed possible, if unlikely, and would have been a great conversation starter (or stopper, in fact) at the next family reunion, and would also, I thought, speak to my desire to convert to Judaism four years earlier. French Canadian also seemed likely. But Moroccan? Really? My parents both grew up in a small town in central Illinois. Farm country. German. Irish. Norwegians and Swedes. Protestants and Catholics and that’s it. As children would they have been able to even find Morocco on a map?

Persecution and isolation gave rise to the Tay-Sachs gene: Eastern European
shtetls isolated from the non-Jewish community, a separation enforced by pogroms and other forms of violence, forced people together and led to intermarriage, as did the colonial boot in Ireland and parts of the UK. The gene has been discovered among French Canadians and Cajuns, although it is still widely—and incorrectly—known as a “Jewish” disease. In fact, the Ashkenazi Jewish population has been so vigilant about testing that the number of affected babies in the Jewish community has declined greatly since the 1970s due to increased awareness and the fact that the standard prenatal test screens only for those mutations common among this particular population. “We really don’t know who we are,” the geneticist reminded me, “or how old these genes are, or where they come from.” His voice, calm and reassuring, and then, in my head, the genetic counselor at Cedars-Sinai in Los Angeles, surprised that I’d had the Tay-Sachs test at all, saying “The odds are astronomical that you would be a carrier if you’re not Jewish or of Eastern European descent.” Enter Morocco. Or someone who went to Morocco, or someone kicked out of Spain who ended up in Morocco and then went to Switzerland or the Czech Republic or Germany or Ireland—all the places I’m “from,” all these accidents of geography. Who are we? Where do we belong?

Nobody knows exactly where these genes are from or how old they are, and perhaps it wouldn’t help to know, but I couldn’t help wanting more information, and wishing, not for the first time in my life, that the word “rare” was not associated with any aspect of my physical body. I had red hair (rare), a disability (a rare one); before laser eye surgery I had severe myopia (also rare!); a valve in my heart did something funky with blood moving into a particular chamber that wasn’t life threatening but was still rare (or at least relatively); and now I had a child with a terminal illness (again, rare, too rare). I wanted, just for a moment, to be normal. I wanted a rest-of-my-life break from being rare.

As a child I remembered seeing
When Bad Things Happen to Good People
by Harold Kushner on my parents’ nightstand and being intrigued by the title, although I didn’t read it until years later.

Kushner, a rabbi, tells the story of his child’s death from a rare aging disease. Like Job, Kushner interrogates luck and God; he uses theology to try to understand why this situation has befallen
him
. He’s a rabbi! He should have an in with God! He gets no answers, of course, but his book struck a powerful chord with millions of readers, if only because it admitted how deeply we are mystified by luck, even though we invoke the word frequently and often use it thoughtlessly. When I was born with a birth defect, a nurse said to my dad, a Lutheran pastor, “I can’t believe this would happen to a man of God,” as if he (a) deserved special treatment as a result of his vocation, or (b) his luck had run out. Both approaches are patently ridiculous, but it’s incredible how these attitudes still permeate our thinking: we get upset when “good” people get cancer; we say someone is nice and isn’t it unbelievable that he or she has had such crappy luck because he or she doesn’t “deserve” it? Which begs the question: who deserves bad luck? Kushner:

I don’t think we should confront one another with our troubles. (“You think you’ve got problems? Let me tell you my problems, and you’ll realize how well off you are.”) That sort of competitiveness accomplishes nothing. It is as bad as the competitiveness that spawns sibling rivalry and jealousy in the first place . . . it would help if we remembered this: Anguish and heartbreak are not evenly distributed throughout the world, but they are distributed very widely. Everyone gets his share. If we knew the facts, we would very rarely find someone whose life was to be envied.

The flip side of this is what the thinker Simone Weil referred to as the dangers of a false sense of the heroic. Whenever someone experiences an event we might deem “unlucky” (like having a baby with a terminal illness), they often immediately flip into “you’re so brave,” which is a distancing maneuver disguised as a compliment. Behind these words you can practically here a voice screaming
Don’t ever ever please please please don’t let it happen to me; at least that didn’t happen to me; so glad it’s you not me; I hope my luck holds out (knock on wood).

Luck. What is it? Who gets it and who doesn’t and why? Is it contagious, like an STD, like a rash? Does bad luck beget bad luck like that weird “so-and-so begat so-and-so” list in the Bible, a portion of which I once memorized for an Old Testament/Hebrew Bible exam in divinity school? Can you get slotted into the lucky track and just stay put? “You’re so lucky,” we say to someone when something terrific happens to them: a new job, an award, a new lover, an engagement, a longed-for pregnancy. “You’ve had a streak of bad luck,” we say to someone else who crashes their car three times in one month or gets dumped without explanation or gets sacked at work for no reason. Lucky. It’s the title of a searing memoir by Alice Sebold. It’s an overpriced clothing brand and a silly magazine devoted to the “art” of shopping. It’s everywhere, and yet it’s meaningless. Luck is a word (just a word) that we use to describe an event that’s already happened. The word is wholly retrospective. We only know how it
did
go, not how it
might
have gone. The combinations of possible outcomes are truly endless. You can be virtuous and still get hit by a bus. If you’re going to pursue virtue, it’s best not to do so with the idea that it will cut you any breaks or grant you a free pass from cancer or divorce or natural disaster or heartbreak or any other potential loss.