Growing up in Queens, NY, Karen Smith had no reason to suspect anything was wrong with her. Even when it hurt to sit for too long, or when her clothes didn't fit right, everything seemed fine. That's because Karen's mother did everything she could to hide the fact that Karen had Spina Bifida. The condition gave Karen severe scoliosis, a curve in her spine that made walking painful and made her skirts hang crooked. Her mother removed any full-length mirrors from the house in attempts to keep Karen from becoming self-conscious. But as she grew older, her scoliosis became more severe. And by the time she was in fifth grade, Karen had to be hospitalized in a children's ward, in and out of a corrective halo. This was just the beginning of three long years of treatment.
Bedridden and limited in her mobility by body casts and back braces, Karen judged the passing of time by the sounds around her as her vision progressively worsened. She found solace in her AM radio, pulling in stations in from far away in the middle of the night. She heard sounds of the courtyard below, filtering up through an open window. She wondered if the other kids would be too old to play with her by the time she's healthy enough to join them.
This story was produced and scored by Garrett Tiedemann, creator of The White Whale podcast. Garrett also works for Sister Story, a series that shares the daily lives of Catholic nuns. Bethany Denton and Jeff Emtman edited this piece. Nick White is our editor at KCRW.
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Karen as a baby. 1958. Photo courtesy Karen Smith.
Karen wearing earmuffs after a snowstorm. 1961. Photo courtesy Karen Smith.
Karen petting a dog. 1970. Photo courtesy Karen Smith.