Devotion (17 page)

The calls came a couple of times a year. A halting voice on the answering machine:
Hi, Ms. Shapiro. You don’t know me, but I’m a friend of _____’s. We’re in the hospital right now with our baby who has been diagnosed with infantile spasms
. The brokenness of the voice was unmistakable. This was a mother or a father willing to go down any road, to make any call, to try
anything
if it might give their child a chance of survival.

Sometimes I was contacted by e-mail—the subject line something like
I.S.—Please Help!!!
Michael and I had created a Web page
where we told the story of Jacob’s recovery. The page featured a photograph of Jacob at age three, his eyes huge, sparkling—full of life. I hoped that parents who were desperately searching for information about infantile spasms in the middle of the night might stumble on it, and see that a positive outcome wasn’t completely impossible. Back when I had been the one searching, click after merciless click, there were no such stories.

I kept in mind my friend’s friend—the one whose son had ended up at Dartmouth. The fact of her unwillingness to speak to me about her experience was incomprehensible to me. Oh, I understood her desire for privacy, and her fear of the pain she might experience on revisiting her son’s long-ago illness. But how could she not have known that talking about it would
help
, actually—not only me, but herself?

Each time I ended a phone call or an e-mail correspondence with an IS parent, I felt emotionally drained, exhausted, and sad. Most of their babies wouldn’t make it. The seizures would leave them brain-damaged, blind, physically impaired. They were being treated by doctors who weren’t willing to take the risk of using the experimental medication that had saved Jacob. It wasn’t FDA-approved, after all. Worse still, some babies were in clinical trials for that very same medication—on subclinical doses. Their parents were lost, baffled. Should they look for a new doctor? Risk alienating the one they already had? Their stories stirred up the old terror, the latent fear—and yet, what I felt beneath all that was the simple beauty of human connection. The consolation, in the words of the poet Jane Kenyon, of one soul extending to another soul and saying,
I’ve been there too.
It wasn’t everything, but it was something—wasn’t it? The reaching out—needing to believe that a hand would be there?

Seventy-two
. According to the Kabbalah, God has seventy-two names. A friend had signed me up for a weekly Kabbalah tune-up e-mail from a rabbi in Beverly Hills. Each week, I opened a new e-mail to find a new name, there in bold Hebrew letters. “Scan from right to left” was the helpful suggestion. That week’s name was accompanied by a New Age meditation:
I find the strength to restrain selfish longing. Through this Name I ask for what my soul needs, not what my ego wants.
The whole thing made me feel like I was playing with voodoo, and eventually I stopped opening the e-mails.

One longs for a device that is not a trick
, Virginia Woolf wrote in her diary. Still, lists seemed important. I liked making lists. Numbers were meaningful. Eighteen, for
chai
. Twenty-three, for the age I was when I lost my father. One in seven million, for the odds of Jacob having fallen ill.

The story of the seventy-two names originates in Exodus 14, verses 19–21. Israelites stood at the shore of the Red Sea. The Egyptians were closing in on them. They were trapped—they had nowhere to go. They cried out to God, asking for his help. And this was God’s answer:
Why are you calling out to me?
I had always thought God’s response to the Israelites to be typical of him.
Who are you talking to? What makes you think I’m listening? I’ve got better things to do.
That was certainly the God I had grown up with: if he was paying attention at all, it was a punishing kind of attention. But
as I explored the story of the seventy-two names, I began to understand it differently.

Why are you calling out to me?
God was imploring the Israelites to look elsewhere, because the answer was right in front of them. At the moment they were helplessly calling out to God, Moses revealed the seventy-two names. These names pierced the collective soul of the Israelites, who began marching into the waters of the Red Sea. On they went into the churning depths, and when they had reached the point of near-drowning, when there was no turning back—
Faith is the substance of things hoped for, the evidence of things not seen
—then, and only then, did the waters part.

Before Jacob turned six months old, people started to ask when we were going to have another one. I was thirty-seven. We didn’t have much time.
Better get going! What are you waiting for?
Something about new motherhood seemed to allow for these questions. I had almost gotten used to the way that pregnancy and nursing had turned my body into a subject that was apparently open for discussion. “Any day now!” my doorman would say each morning I lumbered past him to collect the mail. Mothers at the playground—bleary-eyed, sleep-deprived—lived in a universe where no subject was too personal.
How long are you planning to breast-feed? How was the birth?
But the questions about another baby irritated me. I felt quick flashes of irrational fury every time someone asked.
None of your business
, I
wanted to say. Why did everyone assume we’d have another baby? Maybe we had no intention of having another baby! Maybe we were planning to have just one.

I kept a mental list of only children I had known. In particular, I kept a mental list of happy, smart, contented, successful only children I had known. It wasn’t a long list, but it comforted me. I had been an only child myself. (Well, there was my half-sister, but she was so much older than me, and we had never lived under the same roof.) When I was a kid, I had longed for a brother or sister. Whenever I thought about having—or not having—another baby, my own childhood self rose up and confronted me.

You have to have another one
.

No, I don’t.

You’ll be repeating history.

It wasn’t all bad.

Didn’t you always want a gaggle of kids?

Oh, that was a childhood fantasy.

But the truth is that I was terrified. I was a big believer in not pushing my luck. I viewed Jacob—perfect, beautiful, healthy Jacob—as the greatest possible piece of good fortune. I wanted a baby and had one. The pregnancy had been unremarkable. From the time of his birth, I had marveled at him. Ten fingers and ten toes! Legs and arms and a little round head! Knees and ankles and elbows! Despite the fact that women had been giving birth for quite a few centuries, deep within myself I hadn’t believed that it would be possible for me. Still, I didn’t completely rule out the idea of another child. I told myself that I had time. Thirty-seven, thirty-eight, thirty-nine…women were having babies into their
forties, weren’t they? The world seemed increasingly populated by fertility twins.

Then Jacob got sick. His illness took the question of another baby off the table. All of my energy was devoted to making him better. The year of medication passed. Then the year of catching up: the speech therapy, the occupational therapy, the endless worry. We left the city. We moved to the country. My mother was dying. And then there was the ultimate frightening question: Were infantile spasms hereditary? It didn’t seem so—but so little was understood about the condition. No one could say, for sure.

Eventually, much to my relief, people stopped asking. But I didn’t stop thinking about it. Another baby? Did I dare? It had become the central question, a steady hum beneath all other thoughts. One beautiful fall day, I glanced out my office window and saw Jacob in the front meadow, kicking a soccer ball by himself, and something went through me—a pang so sharp my breath caught in my throat. He
had
to have a brother or sister. What I felt—my own fears and worries—simply didn’t matter.

Michael and I started talking about it. “I’ve never regretted what I have done,” he said at one point. “Only what I haven’t.” I knew he was right. It seemed there was an empty seat at our table. Did I want to look back, some day, and know that it was fear that had stopped me? Risk was everywhere. Getting out of bed in the morning was a risk. Driving the car down the driveway was a risk. Turning on the stove to cook dinner was a risk. I wanted a crystal ball, a guarantee—but I knew there were no guarantees. Not of anything, not at any time.
Pleasure and pain, gain and loss, praise and blame, fame and disrepute
, as the Buddhists say.
All lives contain all of these
.
Moving through fear is its own leap of faith. And so, at forty, I closed my eyes and leapt.

The Pali word
dukkha
—often translated as “suffering”—is central to Buddhist teachings. When Siddhartha Gautama (otherwise known as Buddha) emerged, enlightened, from his spot beneath the Bodhi tree, he offered the first of the Four Noble Truths, which is that life is
dukkha
: “Birth is
dukkha
, aging is
dukkha
, death is
dukkha
; sorrow, lamentation, pain, grief and despair are
dukkha
; association with the unbeloved is
dukkha
; separation from the loved is
dukkha
; not getting what is wanted is
dukkha
. In short, the five clinging-aggregates are
dukkha
.”

Modern translators warn against the idea that there is one correct translation for
dukkha
. The word itself, it seems, is bottomless. According to a contemporary definition by the Buddhist scholar Francis Story,
dukkha
is: “Disturbance, irritation, dejection, worry, despair, fear, dread, anguish, anxiety; vulnerability, injury, inability, inferiority; sickness, aging, decay of the body and faculties, senility; pain/pleasure; excitement/boredom; deprivation/excess; desire/frustration, suppression; longing/aimlessness; hope/hopelessness; effort, activity, striving/repression; loss, want, insufficiency/satiety; love/lovelessness, friendlessness; dislike, aversion/attraction; parenthood/childlessness; submission/rebellion; decision/indecisiveness, vacillation, uncertainty.”

My mother did not want to be buried in the Shapiro family plot. She hadn’t been too fond of my father’s family when they were alive, and wasn’t keen on spending eternity with them. “I’m sorry for you,” she told me, sounding anything but. “You’ll have to visit your parents in two different cemeteries.”

It started this way—the planning of her own death—with an outpouring of fury. She threatened to disown me and leave her estate to Dorot, a Jewish eldercare organization with headquarters around the corner from her apartment. She changed her will multiple times. She made arrangements to be buried next to her parents in southern New Jersey, rather than next to “those people.” Still, as death approached, my mother grew slowly sweeter. As the terrible noise that must have been inside her head subsided, suddenly there was space to see the world, not as the unwelcoming place she had always imagined it, but as it really was.

One afternoon, she came by car service to visit us at our house in Connecticut. We all knew it would be her last visit. She was beginning to fail. First her legs went, then her balance, then memory, one story at a time. She was in a wheelchair, bald from radiation, wearing a jaunty hat. It was an early spring day, warm enough to sit outside. We wheeled her around the back of the house, and she and I sat there, blankets around our shoulders, and watched Michael and Jacob throw around a football. My mother observed
them quietly. What was she seeing? A beautiful child running, laughing. A doting husband and father, tackling him. The snow-drops—delicate white buds—beneath the tree out back, beginning to bloom. I kept looking at my mother out of the corner of my eye. She was shaking her head slightly, smiling. Gone was the judgment (
Shouldn’t Jacob be wearing a warmer jacket? The house sure could use a paint job, couldn’t it?
). Gone was the reflexive need to see the worst in things. Before the tumors took her life, they gave her a few moments of grace.

“Michael’s a good father,” she said, turning to me in surprise. Her face, caught in a bright angle of sunlight, was soft and vulnerable. It was the first kind thing she had ever said about my husband. A few weeks later, she slipped permanently into unconsciousness.

I met Sylvia Boorstein for an early dinner one cold, wet night in New York. I had been looking forward to it for weeks. We sat at a window table in a restaurant in the Time Warner Center, overlooking Columbus Circle, the headlights of cars flitting in all directions like so many fireflies. The world outside, which moments earlier had felt oppressive to me—freezing, crowded, too loud—now looked inviting from our cozy perch.

Sylvia had become, in a short span of time, very dear to me. As was the case the first time I heard her speak at Kripalu, her words seemed to enter me without dilution, deflection—without
my turning them around and examining them to decide what was true.
Everything
was true. And so as we sat together over our Niçoise salad and vegetable risotto, I tried to stay in the moment. Not to be thinking:
How much time do we have left? When will I see her again? She lives in northern California, so far away. She’s getting older. What if something happens to her?
I tried not to lean so far into the future that I squandered the present.

We caught each other up on our lives: Sylvia’s teaching, my work, our travels. We talked about a particularly wonderful Alice Munro story we had both recently read in the
New Yorker
. The final sentence of the story—
I grew up, and old
—had stayed with me. Is that what happens? We grow up, then old? The story had touched on a constant, gnawing sadness that was always with me. This sadness wasn’t a huge part of me—I wasn’t remotely depressed—but still, it was like a stone I carried in my pocket. I always knew it was there.

“I think of it as the edge of melancholy,” Sylvia said, “and it’s where I live—but at the same time I am easily cheered.” Where else was a sensible person to live, but on the edge of sorrow? I pictured myself and Sylvia, on some sort of window ledge, our legs gaily dangling beneath us. Not falling over, but all the while aware that a world of pain simmered below. Sylvia had written beautifully about this: “In the best of circumstances, a loving family, good health, adequate financial resources, and untroubled times are the palace walls that protect our childhoods and early consciousness and allow us to move into our adult lives with confidence. And then, sooner or later, we see what the Buddha saw. We see the truth of change. We begin to understand how fragile life is and how, most surely, we will lose everything that is dear to us. At some
point, in some way, we ask ourselves this question: ‘What is to be done? Is there some way I can do this life with my eyes open and my heart open and still love it? Is there a way not to suffer?’”

Our waitress came by with refills for our coffee. Plates were cleared, dessert offered. I fought the urge to look at my watch. I felt the way Jacob sometimes feels when he’s having a really good time. He always worries about the endings of things, even as they are beginning. He gets it from me. But now, I resisted the future’s tug. I was right there, right then, with a remarkable woman whom I was lucky to know.

“I’m always aware of time passing—of loss, coming around the corner,” I said to Sylvia as we sipped our coffee. “Whether it’s being middle-aged, or watching Jacob grow up, or seeing my in-laws getting old, or even this dinner—” I stopped. This was it. What the Buddha saw: the fragility of life, the truth of change. Whether something small and simple, like dinner with a special friend, or something unbearable to contemplate, like the loss of loved ones, change was inevitable. Change was happening right at this very minute.

Sylvia was nodding, smiling her beatific smile. Beaming with empathy. “I remember, after my father was diagnosed with cancer, I watched him one day struggling with his cane, and suddenly I saw the father of my childhood,” she said. “We used to go to Coney Island when I was a little girl, and he was a very athletic guy—he used to walk on his hands into the ocean. And I saw that young man walking on his hands, and the old man who was walking with a cane…” She trailed off. We both looked at each other. We were talking about painful things, and yet I think both of us felt unaccountably happy.
Easily cheered
. This sharing, this acknowl
edgment of what it is to be human—this was the faint light of hope from the edge of melancholy.

We settled the check, then hugged good night. The time we had together—as Jacob would put it—had flown by. I took a deep breath. The
metta
phrases I learned from Sylvia ran through my mind, in what had become habit.
May I be safe; may I be happy; may I be strong; may I live with ease.
I rode the escalator down, past brightly lit shops and restaurants. Outside, on Columbus Circle, Sylvia would be getting into a taxi.
May you be safe; may you be happy; may you be strong; may you live with ease.
I directed the phrases at my friend as she headed back uptown. I hoped—it was all I could do—that we would meet many times again.