by Dani Shapiro
In Alcoholics Anonymous, during those years, I found my sanctuary. People came from every walk of life. They were rich, poor, young, middle-aged, elderly. They were Christian, Jewish, Catholic. (You didn’t tend to see many Muslims.) The only requirement for membership was a desire to stop drinking—and I did have a desire to stop drinking. I had a desire to stop a lot of things. I had spent so much of my life adhering to a strict set of rules, and then rebelling against them. I had no idea who I really was—but I wanted to find out. And in order to do that, I needed a clear head.
I had a little problem, though. I wasn’t sure I could deal with the God stuff. That word—God—was everywhere in the program literature. It was invoked four times in the twelve steps alone. The third step read: “Made a decision to turn our will and our lives over to the care of God as we understood him.” I had turned my will and my life over to God practically since the day I was born, and I wasn’t so keen on doing it now. And while I appreciated the “as we understood him” part, the truth was that I didn’t understand him. The God of my childhood was a man with a white beard in the sky who judged and found us wanting, who meted out punishment and responded only to heavy-duty petitioning and praise. And look what had happened to my father! He had played by the rules, and had been struck down in the middle of his life. How was that fair or just? What could God possibly have meant by doing that?
There was also the small matter of the Lord’s Prayer. Most AA meetings began or ended with everyone shuffling to their feet, clasping hands, closing eyes, and reciting the most popular of all Christian prayers: Our father who art in Heaven, hallowed be thy name…Even though I had walked (okay, run) away from the God of my childhood—even though I didn’t believe in him—he still scared the shit out of me. What would he do to a Jewish girl who had changed her name to York and recited the Lord’s Prayer?
Despite these incongruities, I stayed sitting on my metal folding chair, day after day, week after week. I went to meetings in high-ceilinged rooms in Episcopal churches, musty basements of rectories downtown. I attended meetings in other cities: Los Angeles, Paris, London. I felt the way people with strong religious affiliations must: at home anywhere in the world. Equipped with a list of meetings, I could find a place any hour of the day where I would be welcomed with open arms.
If pressed, I would have said that I didn’t think I was an alcoholic. I had been drinking too much, to be sure. But drinking wasn’t actually the problem. Occasionally I shared this sneaking suspicion with a fellow member, who would smile at me kindly and suggest that I keep coming back. The implication was that if I was at an AA meeting, I de facto belonged there. And it was true—despite all my self-doubts and guilt about the God stuff—I was comforted by a sense of belonging that I had never experienced before.
I didn’t mind calling myself an alcoholic. It was the price of admission. I would have called myself a two-headed turtle if it meant I could keep showing up at meetings. I felt allied with these people who were all trying to get better. I was trying to get better too. I was looking for a structure, a system, a way to live my life. Putting down booze was the least of it. And besides, no one’s life has ever gotten worse by not drinking.
Many of the twelve steps made sense to me. Made a searching and fearless moral inventory of ourselves. You couldn’t go wrong with that, really. Made a list of all persons we had harmed, and became willing to make amends to them all. Seemed like a pretty good idea. Living life based on a series of instructions developed by two recovering alcoholics—Bill Wilson and Doctor Bob—felt more relevant, more applicable to my daily life, than the accumulated knowledge from all my years in the yeshiva.
Each day I tuned in, mesmerized by the stories people told. Those meetings taught me, for the first time in my life, that people’s outsides didn’t always match their insides. A beautifully turned-out, poised woman broke down weeping over how her drinking had ruined her relationship with her now-grown children. A hip-looking man with a scruffy beard talked about ending up in a state mental institution, destitute and friendless. The stories were often harsh and painful, but there was redemption in the very fact that the teller had lived to tell the tale. It was never too late to begin again. The human heart was elastic. It could withstand untold grief and still keep beating.
I didn’t belong there—I didn’t have any right to be there, really—but still I stayed. I stayed for years. Sometimes AA felt like a fellowship. Other times, like a cult—with its own language, its own set of rules. But either way, something was happening in those meetings—something I had longed for but couldn’t have named. I now know it was a kind of grace. As much as I had tried to leave God out of it, once in a while, as I looked around any given dingy church basement, it would occur to me that perhaps this was God. Not the terrifying gray-bearded figure of my youth. Not the heavenly father from the Lord’s Prayer. But right here, in the eloquence rising out of despair, the laughter out of darkness. The nodding heads, the clasping hands. The kindness extended to strangers. The sense—each and every time—of Me too, I’ve been there too. Never before had I listened so carefully or learned so much.
34.
We took a drive—the three of us—up north, into the Berkshire Hills on a random Sunday. We like to do this sometimes: drive an hour or two, making stops in Great Barrington at the cheese store, the Japanese restaurant, the candy store. Sometimes we play mini golf. Other times—much to Jacob’s dismay—we pull into an antiques shop to poke around. On this particular Sunday, the leaves had begun to turn.
Autumn has always been my favorite season, and even more so since we’ve moved to a part of the country known for its foliage. As we drove past lakes framed with the fiery mix of color, I had a familiar desire to freeze the moment—to stop time. Stay this way, I silently asked. I wasn’t just asking the leaves to hold on to the trees. I was asking Jacob to stay a little boy, for Michael to remain vital and healthy, for myself to stay a while longer in this chapter of my life.
“Mommy?” Jacob piped up from the back seat. “I’m hungry. Is there anything to eat or drink?”
Even this—even my son calling me Mommy—felt bittersweet. When would I be demoted to just plain Mom?
I reached into the back seat and handed Jacob a bag of chips and a milk box. I was longing for the moment I was in, even as I was in it. I was mourning it, as if we were already a yellowed photograph in an album: my family together on a country drive, young, healthy, happy, whole.
I knew better, of course. I knew that trying to capture time—to hold on to anything at all—was not only useless, but a terrible waste. Time was all we had. I had carried with me Heschel’s idea of time as a cathedral. It didn’t have to be Sabbath for this moment to be holy. It was holy precisely because there was no other.
We stopped at MASS MoCA, a museum in North Adams, Massachusetts, where we met a couple of friends and sat outside on that glorious fall day. We had brought our new puppy along with us for the ride. Jacob and the pup tromped through the dried leaves together. It was almost too much for me—the crispness of the air, the cloudless sky, our friends, my husband’s hand in mine, the boy and his pup. The impossible bounty, the moment overflowing.
Let me feel this, I found myself thinking—asking, wishing. Or maybe even praying, if this was praying. Let me live inside this cathedral of time. I didn’t want to think about the latest newspaper headlines, or what had happened yesterday, or might happen tomorrow. I just wanted to feel the warmth of Michael’s hand, listen to Jacob shriek with delight.
It was then that I looked above me, and realized that we were sitting in the midst of an art installation. Suspended high overhead were six cylindrical aluminum planters hanging upside down by wires. They hung from an armature made of steel telephone poles. Out of each planter, a tree grew downward. These trees were not small. Their trunks must have been eighteen inches around. They had clearly been growing this way for quite some time—perhaps years. Their leaves were a rich, autumnal red. They hung in what
seemed a precarious way. It looked, in equal parts, beautiful and wrong. How could the trees continue to thrive? But wait—there was something more. As I adjusted to the sight of the dangling trees, I saw that they had begun to shift shape, their branches bending and twisting, so that they could grow away from the earth and back up toward the sky.
Jacob ran over to us, breathless from his romp with the pup. His sturdy little body leaned into Michael and me. The sight of those strange, displaced trees contorting themselves had forced me fully into the present. I felt it all, all at once—the way that time can slow to a near standstill simply by existing inside it. By not pushing through it, or past it—by not wishing it away, nor trying to capture it. It was a lesson I needed to learn over and over again: to stop and simply be. To recognize these moments and enter them—with reverence and an unprotected heart—as if walking into a cathedral.
35.
I didn’t write during the year that Jacob was sick. Writing was my job, but I had no office, no time clock, no schedule, no boss breathing down my neck. Writing was how Michael and I both made a living—but now, neither of us could concentrate on anything other than making our baby well again. As if it was up to us. As if we might, if only we were smart enough, resourceful enough, brave enough, good enough, be able to reach into the future and fix things with our own bare hands.
Our days were defined by the five doses of powdery, white experimental medication. We tore open packets of the stuff, cut it into even lines, then sprinkled it onto baby food, or mixed it into formula. If Jacob spit up even a little bit, it was potentially catastrophic. Had the medicine been digested? Should we re-dose him? With the help of the pediatric neurologist, we were making it up as we went along. This wasn’t an exact science—but there was also no room for error.
The rest of the time, I sat in front of my computer, not writing. Instead, I spent hours on the Internet looking for references to infantile spasms. There were Web rings, parental support groups, photographs of blind, deaf, physically and mentally impaired children. Parents told their stories: a three-year-old who had finally taken a single step; a five-year-old who had managed to wave. With each click of my mouse, I entered into a whole new world of pain.
I could tell, during that time, who among our friends and family had done the same research. I could tell by the looks on their faces when they saw us. It was something beyond concern. It was pity. They had seen those same photographs. They had called doctor friends. They had heard the unrelentingly bad news, the cold, hard statistics. And they believed that Jacob was lost to us. I couldn’t even look these well-meaning friends in the eye.
Not us, not us, not us. It was the drumbeat by which I lived my life. I couldn’t stop reading, even though it made me feel worse. I needed to know everything, to stare directly into the monstrous face of this disease that was threatening to steal our son away from us. We were going to lick this thing—we had to. I had never been much of a fighter; it simply wasn’t my temperament. But now, my vision narrowed. My claws sharpened. I was a warrior, fighting for every bit of knowledge that could possibly help.
Fifteen percent of babies diagnosed with infantile spasms had positive outcomes. We were looking to be part of that tiny minority within the even tinier minority of babies stricken. Fifteen percent of seven out of a million. Statistically speaking, it was a bit like buying a lottery ticket expecting to win.
Every day, I took Jacob to a play group, or the park, or a Mommy & Me class. I figured if I kept things seeming normal, maybe they would eventually become normal. I sat in circles with other mothers, bouncing him on my lap while singing, “If you’re happy and you know it clap your hands.” I put him on wooden play sets and in sandboxes with other babies, and hovered in a maternal cluster nearby. Most of us carried state-of-the-art diaper bags outfitted with compartments for bottles and blankets and changing pads. The conversation was a hallucinatory swirl of preschool waiting lists, the benefits of breast-feeding, the medicalization of childbirth, family bed versus Ferberizing. I dug my hand into my jeans pocket to be sure that I had a packet of medication with me in case we got stuck somewhere. I lived in fear of missing a dose by even fifteen minutes.
I couldn’t stop comparing. As the months went by, one by one, like birds flying out of a nest, the babies in his play group began to pull themselves up, to toddle a few steps—everything the authors of What to Expect said they were supposed to be able to do. They pointed, clapped, strung together words. Should be able to, may be able to, might even be able to—the owner’s manual to my child continually scrolled like a newsfeed through my head. One day, a perky Mommy & Me instructor told me that Jacob lacked upper body strength, and I should try to get him to do push-ups. I wept as I pushed his stroller home.
For the first time, I understood why the Adlers had closed their doors to me, all those years before. They couldn’t stand seeing me before them, healthy and fully alive—the very embodiment of everything their daughter would never be again. It wasn’t a failure of character. It was a complete and utter defeat of hope.
But I refused to lose hope. Every day, when not entertaining fantasies about applying to medical school (if there was a more useless occupation than novelist, I was hard-pressed to come up with it), I searched for stories with happy endings. On the Internet, there were none. I had heard one story, though: a friend offered to put me in touch with a woman he knew whose son had been diagnosed with infantile spasms many years before. That son had recently graduated from Dartmouth. Dartmouth! I couldn’t wait to talk to this woman. I longed for a story about a boy with infantile spasms who ended up at a great school. A few days later, my friend called me back. His voice was grim.
“I’m sorry. I don’t understand it, but she doesn’t want to talk to you. That time in her life was too painful. She can’t bear reliving it.”
“Not even to—”
“I’m sorry. No.”
I will never be her, I silently vowed. One more item on the list. If Jacob is part of that fifteen percent, I will never, ever be her.
36.
These days, my conversations with people invariably turn to God. I have friends who call themselves atheists or agnostics. Friends who are believers. But the majority of people I know fall into a gray area, a category I would call the disenchanted. I can’t believe in a God who would—fill in the blank. Allow the genocides in Rwanda, Srebrenica, Darfur, to happen. Allow the Asian tsunami. Allow loved ones to die suddenly, tragically. The bottom line: How could God condone—or possibly create—so much suffering in the world? If God exists, he’s either indifferent to our pain, or sadistically inflicting it. I refuse to believe in a God like that, they say.
Did God save Jacob’s life? If God saved Jacob’s life, then it stands to reason that it was God who gave Jacob the seizure disorder to begin with. After all, we can’t pick and choose, can we? Something bad happens, there is no God. Something good happens, we thank him. If I were to believe that God was personally responsible for Jacob’s recovery, I’d also have to believe that he caused it. Seven out of a million. Why would he do that—to us, to anybody? When Jacob was sick, a well-meaning but dim-witted stranger offered my least favorite platitude: God doesn’t give us more than we can handle. Our child recovered. So did that mean that God didn’t think we could handle the dire consequences of Jacob’s illness? Thank you, God. But wait. Wait a minute. What about all those other babies? Had God felt that their parents were more equipped to deal with a lifetime of unending grief?
As I was sitting at my kitchen table trying to untangle the Gordian knot of all this, a friend called to tell me a story. Earlier that day, she had trailered her horse up to a nature preserve along with her teenage daughter and the daughter’s friend. They drove her huge rig along the steep, narrow roads of our town, around winding curves, straining up inclines until they arrived at the flat field where the horse trailers park. At that moment, when she tried to stop, the rig’s brakes failed. If it had happened on the way to their destinati
on, surely they all—my friend, her daughter, her daughter’s friend, the horse—would have been killed. My friend went on to tell me that she had spent the rest of the day feeling very grateful to God. She felt that he had offered her protection. She gave other examples of times in her life during which God had supplied similar protection. Clearly, she felt that God was watching out specifically for her.
I was relieved that my friend was home safe—but something about her story was rubbing me the wrong way. Oh, so God singled you out for good fortune? For being on the right side of near misses? For specialness? To distract myself, I clicked on the New York Times Web site. Six Iraqis were killed by a roadside bomb hours earlier. A fire had blazed through a Brooklyn building, killing an entire family. A child had been abducted in the Midwest. I didn’t believe that God had a hand in that day’s tragic events—any more than I believed that he had steered my friend’s rig to safety. I didn’t believe that God had stopped Jacob’s seizures, or that God had caused my father to pass out behind the wheel of his car. I didn’t believe that God considered what people could or could not handle. Still, I said thank you and please into the thin air. I prayed for the willingness to pray—not to an indifferent God, certainly not to a punishing and vengeful God, not to a God who was watching out for me—but to the God I felt all around me, the more I looked.