Yesterday, I did the most amazing thing: I scheduled my day. My husband promised a friend he’d help him with a home improvement project that I suspected would turn into an all-day affair. I had a couple of tasks I wanted to accomplish with my Sunday of solitude. I not only made a list – I scheduled the items into specific blocks – and I told myself if the time on a task ran out, that’d be it.
After I organized my notes from interviews for a book-length project and went for an eight-mile run in the January sunshine, I worked on PR for the piano playathon, an annual event benefiting Taylor’s Tale and the fight against Batten disease in Raleigh, NC. Two hours before the UNC-Clemson basketball game, I took a cup of decaf coffee, a blanket, my snuggly dog and a book I’m reading for fun (I love to read, but it doesn’t happen often) up to my reading nook by the front window in my bonus room.
For awhile, I lost myself in the book, a novel set in post-Civil War Virginia. As I soaked up the silence and watched the late-afternoon light dance on the spines of books I’ve collected for almost three decades, I thought about how my sister, Taylor, who taught herself to read before she graduated from the preschool class at our church, can no longer enjoy the stories that fill the pages of the books lining the shelves in her own room.
When we learned Taylor would lose her vision, she began working with Jill, a VI specialist (teacher for the visually impaired). My sister learned the letters of the braille alphabet. She learned how to string the letters into words and the words into sentences. She showed me the correct way to read the raised dots of the braille alphabet with my fingertips, even though, because I’m not blind, it would have been easier for me to learn how to read the letters with my eyes. She learned how to type on a Perkins Brailler, a braille typewriter. She typed braille notes for me and made a braille birthday card on fire engine red construction paper for my 27th birthday. Her teacher, Jill, wrote the words underneath the raised dots, because, unlike my little sister, I never mastered the braille alphabet.
But then Batten disease stole braille from Taylor, too. My sister is the girl who, not so long ago, foiled her church preschool teachers’ idea to help the other kids learn to read when she skipped down the hall and announced the names printed in neat, block letters above each cubbyhole. But then her eyes quit on her, and a few years later, her fingers quit on her, too.
You could say the books lining my shelves are just things. You could say the stories they share are just words on a page.
But while they’ve brought me great joy, they’re another symbol of all my sister has lost; of all she stands to lose.
I’ve heard something about this story.
I don’t like the way it ends.
