This Is Not a Love Story: A Memoir (23 page)

My brother has no memories from the time he could not speak. I know because I’ve asked him many times. The last time I did so was in early 2014, a few months before this manuscript’s completion. I asked my brother if he remembered the summer he returned to Israel, five years before his bar mitzvah.

His reply was terse: “I do not remember that far past in time. I remember after my bar mitzvah, something like maybe ten years before your wedding.”

It was the first time I’d asked Nachum about a memory in over two years. I knew I shouldn’t have, that he hated it when I forced him back to that place. Several times as a teenager I had prodded him with my questions, poking and pushing him back into the past.

“
Atah zocher?
Do you remember when I broke the plate and blamed you? Do you remember the shul we went to on Fifty-First? Do you remember Kiki, the therapist with the bright red hair?”

Nachum did not remember. His mind had let go of the memories that had no words to explain them. He could see the first ten years of his life in pieces, the chain on the bike, the shreds of balloon in the branches of a tree, chairs piled up, higgledy-piggledy, in the shul backyard. For such a boy, an attempt to access memories was like a painful extraction.

Once, in Israel, I pushed too hard.

“Atah zocher?”
I asked him as we walked downhill toward home. “Do you remember in the country, the picnic we had near the lake, with the geese?” But it was my fifth question, and Nachum reared back like an untamed colt.

“
Loh, loh, loh.
No, no, no. I, I, I dih-do not remember nih-nothing, nih-nothing, nih-nothing!”

I watched my brother march away from the places he could not understand and the things he could not remember: objects, voices, parts of faces, pieces floating in a vacuum.

When I was sixteen years old, I met such a boy again.

Chaim was four, an ultraorthodox child who lived a few blocks from our house in Brooklyn. Once a week on the Sabbath, my friend and I would take him out for a walk or to play for a couple of hours. We did this as part of a high school volunteer program. Chaim was autistic, the fourth of six children, and his mother really needed the break.

Chaim did not speak. Often, when we walked up the street, he’d hum a quiet tune to himself, as if this substituted for the words he did not have. But sometimes Chaim did not sing. Instead, he’d stop walking and stand rigid and still, as if waiting for us to understand what he wanted. When we didn’t, he’d sit down, little feet folded under him on the cold asphalt, refusing to budge from his place. We’d plead, beg, and cajole, finally pulling him up by his arms, trying to force him to walk. And then he’d begin to wail. He would look up at me, eyes desperate, and jam his tiny fist into his mouth as if trying to pull out the words that would not come.

One early Sabbath afternoon, my friend was in bed with the flu, so I walked up the steps to Chaim’s apartment alone. Chaim’s father opened the door, and immediately I knew that something was wrong. It was the plates still filled with food that lay untouched on the empty table. It was the boy, one of Chaim’s brothers, crouched in the corner, eyes peering out from behind a chair, his other siblings nowhere to be seen. It was Chaim’s father, pale, angry, his head bare, his side curls disheveled, staring at me as if he had no idea who I was or what I was doing there. Suddenly, he turned and walked away without a word. His tzitzit strings swung furiously over his boxers. His bare legs hurried across the living room. I wondered where Chaim’s mother was.

Abruptly, he turned and walked back to me as if to say something, and then stopped and returned to the corner of the room near the door, where an infant’s glider stood.

“So you’re taking Chaim out,” he said flatly, looking at me from behind the swing.

“Yes,” I said.

He pushed the swing in frustration. We watched the empty seat glide in a silent arc.

“What’s the point?” he asked, his words like a jab in the air. “Why take him out?”

For a moment I was quiet. Chaim’s father did not wait.

“Do you see anything in him?” he asked. “When you take him out, do you see anything in him? Anything at all?” And he stared at me suspiciously.

“In Chaim?” I asked.

But Chaim’s father never heard me.

“What’s the point?” he said, fear and rage in his voice. “What’s the point? My family keeps telling me to put him away—there are homes for such kids. No one sees anything in him. There’s nothing there to see. Only my wife refuses”—he did not seem to notice the crouching child in the corner; he just pushed hard against the swing and went on—“to see reality. We can’t fix him. It’s hopeless. Enough. My family’s behind me. They keep telling me, ‘What are you doing to your other children? It’s the family or it’s the boy—you could barely manage as it is,’ and this. This. This. This makes no sense. There’s only so long you can drag this out. Why are we dragging it out? I don’t see anything. There’s nothing there. She’s still changing his diapers. He’s four years old. He can’t talk—not one word. We took him to doctors. The school is useless. If somebody would know what to do, how to make him better…They just know that he’s autistic, and now what? She can’t care for such a child. He’s destroying her. It’s destroying this home. We have other children. There’s nothing in the boy—nothing. I don’t know what she sees. It’s the family or it’s the boy. It can’t be both.”

He stopped, his hands hanging limply at his sides, his rage spent. The glider slowed down, coming to a stop.

I looked at the Shabbos table, the pot filled to the brim with the waiting
chulent.
In the rooms around me there were children, I knew, hiding. They were hiding beneath blankets, and inside closets, hands covering ears, breathing very, very quietly, waiting for the battle to end. The wide eyes still stared out at me from behind the chair in the corner.

I could hear the harsh sound, the squeal of the chair as it was shoved back, hitting the counter. I could hear my father stride down the hallway. The front door slammed shut and he was gone. The walls of my room trembled. What if my father left the house and never returned? Would he take me with him? Would I want to go? Would my mother take Nachum and tell the rest of us to leave?

“Say
‘baruch!’
”

“Say
‘baruch!’
”

“I will buy you a Lego, a flying horse!
Baruch, baruch! Baruch, baruch!
Say
‘baruch’!
It means ‘blessed’!”

And I told Chaim’s father that there was hope. I knew because I had such a brother. Nachum was thirteen months younger than me, I told him, and once he could not speak. He could not even hum a tune like Chaim. But today my brother was fifteen, and we had long conversations. He attended a regular high school, with help. His bar mitzvah had been two years ago and it had been beautiful. He went to shul every day and prayed. My brother could read and write, on a low level, but still, he could read and write. He knew who I was, and who everyone in our family was. He was learning to take the city bus by himself to school. He was autistic, still different, but he looked you in the eye when you spoke.

Chaim’s father stared at me as I told him about my brother, about my mother and the things she had done. He was silent until I stopped speaking. I could see his eyes questioning, as if he did not know whether I could be trusted, as if I’d just dangled before him an impossible lie.

He stepped in front of the glider. “I’ll tell my wife you’re here,” he said, and disappeared into the hallway.

A few minutes later, Chaim’s mother came out, holding him tightly by the hand. Chaim stared blankly ahead. We spent two hours at the park, where I watched him wandering around, seeking something. Then slowly he began to hum until we went back home.

In the end, I don’t know what happened to the boy. I did not find out exactly what had triggered the fight between mother and father. I didn’t have to. This was a story I knew.

A few weeks after the incident, Chaim’s family moved to a different city and I never heard from them again.

I often wondered about him—not Chaim, but the one behind the chair. I wondered what he felt in that closed-in corner as he listened to me speak. Had he been angry? Relieved? Was he afraid that I had convinced his father to keep the crazy brother? I wondered if he prayed for him to die.

A few years passed. I was twenty years old, newly married, and like thousands of Orthodox couples, my husband and I had moved to the Holy Land, where young newlyweds went to start their lives. For several years I lived in Jerusalem, in an ultraorthodox neighborhood just ten minutes away from my Aunt Itta. It was then that my brother and I grew very close.

At that point, nineteen-year-old Nachum spoke freely and did not stop unless you told him to. He had finished high school and held a paying job at a printing center. During the week, he took lessons in photography and computers, and twice a week he exercised at the local gym. On Fridays he helped my aunt prepare for the Sabbath, and if he had time, he’d come by my house and we’d sit and chat. Sometimes he’d offer to take the baby for a walk.

I watched him from my window one such sunny afternoon, as he carefully pushed the stroller down the hill. It struck me as it did every once in a while, this incredible thing that had happened: I could hand Nachum a bag, a bottle, and my son in his stroller, and trust that he’d know what to do. But just as immediately, the guilt rushed in, pulling tighter and tighter around my chest. I was expecting my second child, and the questions and fears that had plagued me the first time had returned.

The question had occurred to me suddenly, during the third month of my first pregnancy, as I stared down at the contours of my softly swelling body and the growing bump that held my child.

What would I do if my baby was autistic?

I had looked up in shock at the thought.

What would I do if the baby was autistic?

For months, I grappled with the thought. For months, I struggled, because not once could I answer the question: Would I take my own child home?

I could not understand myself. My brother was the miracle boy. Nearly a decade had passed since the book
My Special Brother
was published, twelve years since Mrs. Friedman had reassured me of my brother’s higher soul, and within the tightly bound circles of the Orthodox community, attitudes had changed drastically.

Perhaps it was the explosive growth of the community, and the increasing numbers of special children born, making them harder to hide. Perhaps it was the small number of families who had successfully raised such children, now part of the community, each in their own way. Perhaps it was the growing pool of resources, treatments, and experts coming in from the outside world, making it a possible thing to raise such a child. One thing was certain: by the time I graduated high school, there was a growing number of organizations, specialized schools, and programs that helped families cope. There were volunteer groups, often organized through the Orthodox schools, which sent their students to help in such homes. Things were different from the way they were in the world I had grown up in. Now the ultraorthodox truly embraced such children as higher souls. Now few ten-year-olds worried that no one would marry them because of an autistic brother.

So I should have felt different when the possibility struck me that I might have an autistic child. I should have felt the instinct to protect, like my mother’s; a willingness to fight, like my aunt’s; a deep certainty that this was the direct will of Heaven. But I hadn’t felt that. What I felt was terror. Then shock at the terror, and waves of guilt.

It took me years to understand my own guilt, to see that my psyche did not care that the present reality was different; it had reacted to the experience of the past. Because I knew the hell from the inside, the torturous twists and turns of that nightmarish road, the mind-bending exhaustion, the chaos, the stuff that rips families apart. My reaction during my first pregnancy was not that of a mother, but of an eight-year-old child watching her family unravel. My brother’s screams still echo in my head. I can still hear the thud of his skull against the table.

I have since learned to stop wrestling with the question of what I would do if I had an autistic child. Instead, I stand in awe of those in my family who finally made it work, because it was in that excruciating confrontation with myself that I also fully absorbed the enormity of what my parents had faced. I understood that they had been forced to choose between one child and the rest of us in a time and place where the two could not be.

Today, I watch my brother going about his life, ever growing, ever changing, at each new stage and development learning to cope with the complexities that will always be his life. I watch him thriving and struggling, part of the first generation of autistic children to survive into adulthood, outlasting every expectation and hope of what such a boy could be.

A few years ago, I wrote my first article about my brother. The article, published in an Orthodox magazine based in New York and Israel, was read by my parents, aunts, and cousins, and also by Nachum.

I had not meant for my brother to read it. The article included the blunt description of him, which I had used as a child, as my “crazy brother.” But one day on the phone, after complimenting me on the piece, my Aunt Itta’s voice filled with tears and emotion. She said, “Nachum is eager to talk with you. He read the article too.” And suddenly, he was on the line.

“I, I, I rih-read the article…about me when I was a boy.”

I swallowed hard.

“So, so, so—it was—it was vih-very, very nice.”

I cringed. “You liked it?”

“Yih-yes,” he answered. “But—but. But when you were a little girl—you, you, you—you were also autistic?”

I was silent, baffled by the question.

“Whih, whih-when—when you were a little girl, you—you were also autistic?”

Still silent. Then I said, “Uh. Uh…I can’t…I can’t remember. I don’t think so. I’ll ask Ima.”