||Orchid of the Bayou A Deaf Woman Faces Blindness
Cathryn Carroll and Catherine Hoffpauir Fischer
Chapter Nineteen: "Yes, I Have Usher Syndrome"
More than half the individuals who are deaf and blind in the United States have Usher syndrome. This is about ten thousand people, three percent of those who are born deaf. Fortunately, RP usually descends slowly and spares children. Even at my old school, those students who groped for the walls of hallways and felt for the table under their books usually had enough sight to learn through vision.
Art Roehrig says that I accepted my diagnosis quickly. Acceptance didn’t feel quick. Painful, yes. Many layered, yes. Intermittent and reversible, yes. Quick? No way. For a long time, I couldn’t even talk about it. There is an ancient story about a Spartan boy who found a mountain lion, hid it under his shirt, and went about his tasks, even as the lion, restless and hungry, clawed at stomach. That was me and my diagnosis. I helped students in the library, consulted with teachers on appropriate readings for their classes, took care of Jason, and went out most weekends with Lance to visit friends. I laughed and gossiped. And all the while there was this little lion of a diagnosis clawing at me under my shirt.
Rachel Stone, now married to Ray Harris, was teaching at Kendall, the elementary school on the Gallaudet campus, just down the hill from the high school where I worked. Rachel and I had been friends since our Gallaudet days. We were both part of a group of couples that got together once a month in each other’s homes to watched captioned movies, available then through the federal government. Rachel would later write Let’s Learn About Deafness, a book for teachers of deaf students that included historical information about deaf people and deaf education, and activities for the classroom. She was taking graduate courses in counseling, and pregnant with her second child.
“I feel great,” she said, smiling and touching her stomach.
I was pleased that she had found time to stroll into the library and talk.
“You look good,” I smiled. She had just switched to maternity clothes, and she was as lively and effervescent as ever.
“I hope it’s another girl,” she said. “and I hope she’s deaf.”
I laughed. In those days, no one had a clue about a child’s sex until he or she was born, and it didn’t surprise me one bit that Rachel wanted another deaf baby.
“Did you save the baby clothes?” I asked. Her first child had been a girl and deaf, too.
“Oh yes,” she said. “They were hardly worn.”
I thought about Jason. He was starting to walk now, a miniature man toddling about the room.
“They grow so fast,” I shook my head.
She nodded, still smiling.
A student arrived a book in his hand. “Just a second,” I told Rachel and turned to quickly stamp the boy’s book. “November 14,” I reinforced the date the book was due by pointing to it and meeting the boy’s eyes. We always hoped that this would get our books back on shelves before the advent of summer, though it rarely did. The boy nodded and left. I turned back to Rachel.
“Why don’t you admit you have Usher’s Syndrome?” she asked suddenly.