Author Matthew Derby on how writing The Silent History helped him find the sister he never really knew.
Justine Zwiebel/BuzzFeed/Photos courtesy of the author
In the dream I am in my childhood home. I am standing in the doorframe of my sister Margaret's room, watching her unpack her bags from a semester at college. For some reason she is always returning from a semester at college, even though she'd be in her fifties by now. I stand there, transfixed — not just because Margaret is standing in her bedroom, or because she's getting a college education, or simply because she's alive and vibrant in this impossible present moment. It's that when I enter the room, she speaks to me. I hear her voice. This is always the thing that stays with me when I return to the waking world. Her voice, in my dreams, is somehow clear and familiar and utterly alien at the same time. Because Margaret never spoke a single word in her life — a life that ended before I could begin to understand it for what it really was.
Three days after Margaret was born, the doctor met with my parents in his office. He had some bad news: Margaret was blind. Her eyes had never fully formed in the womb, a sign that something had gone wrong early on in my mother's pregnancy. The doctor told them to adjust their expectations for Margaret and discharged them from the hospital. While my father drove home in silence, my mother held Margaret in her arms and wondered how she would raise a child who would never see her face. She thought about how she would break this news to my brother and sisters, who were at home watching Bonanza on the living room rug. She entertained the possibility that Margaret's blindness was a punishment from God, but then quickly dismissed it. God didn't work that way, she thought. Margaret was a gift, she decided, and she just had to figure out how to unwrap it.
Four months later, my parents met with Margaret's pediatrician in a wood-paneled office that looked out on a supermarket parking lot. He was concerned that her development was not on track for a blind child. She was showing significant delays along several axes, which suggested that the blindness would be the least of her issues. The pediatrician speculated that Margaret would never walk, that she would never be able to attend school or dress herself. She would never talk. He was firm with my parents — they should not go chasing after doctors who claimed they could cure Margaret. Her disabilities were so many and so profound, the pediatrician said, that there was no possibility her condition would ever improve. The best my parents could do, he said, was to love their daughter for the person she was.
They initially dismissed the test data, determined to raise Margaret as a "normal" child. But as she grew, her disabilities became more pronounced. She failed to hit any of the developmental milestones my brother and sisters had passed without incident. Her eyes were perpetually closed, and she flapped her arms and lolled her head, and after a few tentative trips to the grocery store where Margaret drew prolonged stares from neighbors, my mother decided it was best to keep her home where she would be safe from condescending scrutiny.
Justine Zwiebel/BuzzFeed
The family dug in and made our house a sanctuary for Margaret. My parents bought a special hospital crib for her — a fearsome, cage-like apparatus that ensured she wouldn't fall to the floor in the night. A local handyman built a special chair to make it easier for them to feed her. We constructed a moat of silence around the house. There was a world outside and a world within, and we took an unspoken oath to keep Margaret's presence a closely guarded secret — so much so that we rarely spoke of her at all. And in the vacuum of this collective silence we developed a fearful reverence for her, as if she were some kind of damaged angel who'd fallen through our roof — an alien being whose survival required superhuman reserves of vigilance. Our house became a convent, a devotional space of whispered prayers. We couldn't express anger or frustration, because to do so would be to question God's authority and the very order of the universe. My mother shunted her grief with tranquilizers, periodically locking herself in the family station wagon so that she could weep without being discovered by my father, who bore the duty of Margaret's care as though it was preordained.
As Margaret grew older, her health worsened and her needs became more complex. In July of 1969, on the recommendation of their priest, my parents drove Margaret to Craig Developmental Center in Sonyea, N.Y., 11 miles from our house. As the crew of the Apollo 11 rocketed toward the moon, my parents lay Margaret in a specialized bed, placed her favorite stuffed animal — a blue rabbit — next to her, and returned home in the dark, driving past corn fields and the local salt mine, parking in the driveway just as the astronauts orbited past the Sea of Tranquility.
My early memories of Margaret are more about her absence than her presence. My parents kept the large metal crib in her room so that they could bring her home for holidays, and in its empty cell I often played a game of "prisoner" with my friends. There were pictures of her everywhere, close-ups of her in her bed, her eyes forever closed, grinning at something inside her mind that we could never access. My parents visited her every Sunday, returning late in the afternoon smelling of the industrial-strength cleaning agents. They were at the facility so often that I told my kindergarten teacher that my mother worked there.
from BuzzFeed - Latest http://ift.tt/1nDTYz6
via IFTTT
0 comments:
Post a Comment