I was riding in our friend’s red, rattling car. The car that had been filled with balloons to celebrate my last birthday—the time we traveled to visit Mom. Now my wife and I were going to inform my forty-five year old brother of her death. To inform, support, and console my kid brother—the brother who relied so heavily on Mom for a connection to the world. The only connection that was organic, as opposed to those forged by people paid to care for and teach him after sixteen years of neglect in the Willowbrook State School for the Mentally Retarded. The brother who would stroll on the boardwalk, holding her hand, and consider it an exceptional day. The brother who would spend an occasional Saturday night in “his” bed at her house, watching television and looking at picture books or coloring with his horde of crayons, freed, however fleetingly, from group living.
Listening but not hearing my wife Lisbeth’s words, I looked at the passing concrete wall on the right, the moving traffic in front, the river browning in the dusk on our left.
I was going to tell Fred Mom had died. He knew she was sick, had visited her often at the hospice. Direct care workers had spent much time discussing death with him and his housemates—what it meant, why it happened, how to acknowledge it. They knew to expect me. I felt Fred was prepared. But now that the event had finally occurred, I was afraid to tell him.
It hadn’t yet settled in with me, even though my daily visits to the Bronx hospice over the past two months were officially finished. Before I could come to terms with my mother’s death, I needed to recover from firing the first hospice doctor because he referred to my mother as one of “those kinds of patients;” I needed to recover from the always unavailable hospital surgeon who told my mother she was completely cured three weeks before the tumor returned; I needed to recover from hearing my mother’s refrain of “I can’t, I can’t” when she was asked by a doctor and social worker in the cancer hospital to decide whether she wanted to undergo chemotherapy. “My hair will fall out! I’ll feel sick!” And with tears spotting the hospital sheets, “I don’t know…I don’t know!” I needed to recover from speaking with psychiatrists called in to deal with my mother’s hysteria, nastiness, and fear.
“She ripped out the catheter?” the hospital doctor asked once. “WOW!” The wrong concoction of drugs had caused her to hallucinate. She had seen a person running away from spirits.
I needed to recover from more than the past two years of illness. I needed to recover from the woman debilitated by her husband’s death, who once called me from a Brooklyn bank: “I can’t sign the check. My hand shakes too much. Come here!”
“Mom, I’m in Manhattan. Tell the customer service rep your problem. You can make an ‘X’ like the last time.”
My mother was now dead; she was free—“I’m going to Irwin,” she had often said with a smile when we knew her fate—her wish since my father died.
And I was free. “It’s just you and me kid,” said Lisbeth, a psychoanalyst, referring to us both being parentless. I was free from the person who had so influenced my moods and choices that I fled to Denver and then Denmark for college, returning only because New York was the Mecca for theater actors. But in a way I also felt abandoned by the person who had born me, and with every passing minute, my memories of her seemed to sharpen and come into greater focus. And distance, like absence, makes the heart grow fonder, especially when it’s your mother.
We arrived at my brother’s Brooklyn Intermediate Care Facility (a group home for eight) in what seemed a momentary breath. I imagined myself wearing a long, black cloak, advancing without feet, without effort, as we neared his first floor apartment. I opened the door and blaring light smacked into my eyes. I blinked as I sought out my brother’s small frame among the scurrying blurs of counselors and residents. “Why don’t you go into Fred’s room?” someone said, and I followed my brother down the narrow hallway.
He sat at the head of his bed, pictures of him with Mom, Lisbeth with me, and Dad on the wall above. It was a neat room. He had asked the counselors to straighten it up. I sat at the foot of the bed, his stuffed animals, picture books and music cassettes on the dresser behind me. Lisbeth sat on his roommate’s bed with her coat still on.
I looked at him. His usually unruly head of hair was combed to the side, and I could tell by his smooth face that he had been assisted with his electric razor—there were no missed spots.
“How are you, Fred?” said Lisbeth.
Quiet. He looked at me.
“You know why we’re here, right?” I said.
“Yeah,” he said, permitting more words to roll from my stomach.
“You know Mommy has been very sick.”
“Yeah.” Composed, and unusually focused, his wide-lens eyeglasses lay cockeyed across his nose, balancing his droopy left eye.
“You saw her lots of times in the hospice.”
“Yeah,” he whispered.
“You saw she was getting very weak.”
“Mommy died.” I studied my brother’s face harder than I had ever studied it before. He looked like a stranger. “She’s no longer in pain,” I continued.
Pointing upward with his left arm, he said, “She’s in heaven.”
I was surprised at the immediacy of his response, and I was happy that I understood his incomplete sounds. The speech therapist assigned to his residence had stopped training him years ago.
“She’s with Daddy,” he continued.
“Yes,” I said, thinking how painful this process had been ten years earlier, when Mom and I had needed the assistance of his counselor to tell him that Dad had died.»
“I’m going to heaven,” he said. “I’m next.”
“What do you mean?”
“I’m going now.”
“Not now,” I said, suddenly realizing how he was connecting hospitals to doctors and doctors to death and thus to himself. His ability to create such a connection startled and haunted me.
“No?” he asked.
“No,” Lisbeth and I chimed in at different decibels. “You’re going to be here a long time.”
“Mommy loved you very, very much. We love you too,” said Lisbeth. “You’re not alone. Allan is here, I’m here—everyone in the house is still here too.”
Ideas never immediately sank in with Fred—he processed information about ten beats after hearing it—so we waited. But there was no aftershock. Fred seemed composed, maybe even happy to have visitors in his room.
“Would you like to go out?” Lisbeth said. “Maybe for some ice cream or McDonald’s?”
“Ice cream,” Fred said, and we began a new life.
No longer first and foremost sons; we were simply brothers. It was my turn to advocate for Fred, be there for him, listen to his constant, comic complaints about this body part hurting, that person bothering him, having a broken watch, and needing new clothes. His search for attention would no longer be received by the sighs and guilt of a mother, but the skepticism and humor of a brother. A brother who, up until then, had never had to care for his sibling. A brother who knew nothing of the business of caring for the socially unwanted. A brother who was a hero by circumstance, not choice. A brother who, before, had rarely visited during the year. A brother who would again be in his sibling’s life, like when they were children, before every other Sunday became “Visiting Fred Day”.
“Go get Fred with Dad,” Mom would say in the parking lot, outside Building 6 at Willowbrook, a campus built for fifteen hundred that housed five thousand.
It was the part of the visit she couldn’t endure—entering the institutional halls that enveloped her son. Dad and I would walk along the concrete path that lead to a metal door. The flat land around us green in summer, either brown or white in winter, and always eerily peaceful. It never warned of the activity within, of the stench of urine that didn’t fit with the shiny floors and bright, pea-green wall tiles.
Inside the door, one of the child residents would spot us and all Hell would break loose.
“Daddy,” the stranger would bellow, such a huge sound from such a little person.
“Daddy,” we would hear, and suddenly a cattle rush was on, only it was children three feet tall padding their feet against the ground, filling the eight-foot wide hallway with ferocious need. This tonnage of tiny humanity would pound its way toward my father and me, chanting, “Daddy, daddy, daddy,” smiles bigger than the sun, eyes wider than the moon, little arms reaching out to be the first ones to touch us. “Daddy,” I’d hear, the 3-D noise bouncing off unyielding walls. Then, zoom, phumpf, splat—grasping arms would be around my legs, trying to touch my face, hugging my waist, and the attached mouths would now be yelling, “Daddy, daddy, daddy!”
My father and I would shift our weight from one foot to the other, wading in the accumulating mass, peeling little hands away, fending off their intensity. “No, I’m not your Daddy,” I’d say, smiling. “No, I’m not,” I’d say, looking into misshapen faces. Over and over and over again I’d repeat my words of defense, while searching above their heads for my brother.
We’d catch the attention of the Resident Nurse who took such good care of Fred, maybe because she saw potential, maybe because she often saw his family. Nurses. Nobody was sick. But society labeled children with mental retardation as nuisances, not people—menaces to society, without rights, to be treated with medication. Because imperfection was an embarrassment, they were to be isolated in self-sufficient institutions meant to “calm them.” The nurse would wave hello, disappear and then reappear holding the tiny hand of my little brother. Freddy’s face would beam, a searchlight piercing the dark. Nearing us, he’d pick up speed, his little legs and poor balance never taking him quite as fast as he wanted to go.
Standing on the other side of the metal door, the peacefulness would slam into us as something out of a storybook. The change would be too sudden, too shocking, the outside smell too good. And we’d walk away, Freddy holding the hands of his father and big brother, looking forward toward the parking lot where he knew his mother would be.
Now when Fred talks of his years at Willowbrook, he says, “I helped them get dressed,” referring to his wardmates, as he moves his arms up and down as though pulling on a pair of pants. He doesn’t mention the rows upon rows of cribs. The many side-by-side malfunctioning toilets. The overwhelmed staff spooning mashed dinner down gullets within three minutes, often causing pneumonia. The sickness induced by medical experiments conducted without informed consent. He doesn’t mention the nudists, the hitters, or the simply defeated sitting on the floor in their own feces. Horrors our family did not even know of.
“Do you want a cone, Fred?” I asked, bright lights bouncing off the Carvel store stainless steel counter.
“A cup,” he said. I did not yet know of his difficulty with hand dexterity.
“Vanilla or chocolate?”
Waiting for our orders, we took a picture: Lisbeth’s head is nuzzled between two stocking hat-topped smiling faces, a blue whale above us. It is winter. It is cold. It is dark outside. In that pastel-colored store, for a moment, we are a family.