Editor’s note: To celebrate the life of Louis Braille (1809-1852), who made reading and writing possible for people who are blind, we’d like to acknowledge his young entrepreneurial skill that changed "night writing" into a code of dots we know today as braille. VisionAware peer advisor Maribel Steel, shares an excerpt from her unpublished memoir. She reflects on her teen years when her sight mysteriously worsened and how facing the question, "to braille or not to braille," was met with personal uncertainty.
As a shy adolescent, I harboured a yearning to be "normal" like the other girls at school. But my body began changing in frightening ways as if I was trading skins with a chameleon. My childhood, which once had been predictable and happy, now threw me into a state of complete uncertainty. I couldn’t understand how it was possible for my physical image to change. It seemed that puberty had swallowed up my young identity and transformed me into a new spotty alien I hardly recognized. Who was that creature staring back at me in the mirror?
Trying to Hide
In my growing teenage restlessness, I was having difficulty seeing the blackboard at school. I didn’t want to mention my predicament to anyone in my peer group for fear of being ridiculed; I wanted to remain inconspicuous, except this was already made impossible by having an unusual name for an "aussie"—with the girls calling me everything from Arabella, Annabelle, and Marylou to Marigold and Tinkerbell!
It was easier to contain my feelings of doubt by ignoring the dimming of objects and the blurring of words in my school books. I blamed all my physical changes on puberty and wrestled with all the discomfort growing underneath my skin. So, my reluctance to sport a new image I didn’t want to wear continued to grow.
The passage between two states of seeing often confused my family as my vision varied between clarity and blurriness, between seeing on some days and not seeing on others. I drifted between needing help and wanting independence. I felt betwixt and between being surprisingly normal and painfully different. Even with all this oddness, I never suspected what was really going on within the thin layers of my retinas.
By the time I was 15, the onset of a mysterious loss of sight prompted my parents to seek a medical diagnosis. After visiting 17 ophthalmologists and other medical specialists, my parents persuaded me to undergo tedious tests of all kinds. During a prolonged stay in the hospital, my family learned of my pending blindness—I had an incurable eye disease, retinitis pigmentosa (RP).
It became a time of adopting new skills in order to function in a sighted classroom. I used handheld magnifiers to read textbooks and a tape recorder accompanied me to various lessons. I copied the classroom notes using large pads of writing paper with a dark black ink pen in order to make them legible. In the evenings, I spent hours meticulously re-writing the same work as neatly as possible into my homework book for the teacher to mark the next day. Sometimes, my mother sat by my side and colored in those parts of my work I couldn’t see, adding her artistic flair to brighten up the pages as well as lighten our hearts. Then came the question.
To Braille or Not To Braille?
I came home from school on one particular day when my mother presented me with a huge sketch pad. "Look inside," she smiled, "I’ve been busy all day creating a surprise for you."
As I turned the pages as cautiously as if opening a precious archive, a series of rectangular boxes with purple circles in different spacings caught my eye.
"It’s the braille alphabet," said my mother proudly. "I’ve copied out all the letters in large format so that you can see to learn them."
I was more taken by the beautiful symmetry of her work, the precise lines, the exact gaps between boxes, the fullness of six circles in different formations more than I could accept the concept of learning braille.
"But, Mom. I don’t want to learn braille. I’m not blind."
"Darling, you don’t have to decide now," she said. "Maybe just keep it in your school bag."
Learn braille? It was not in my wildest dreams to accept that one day I might not be able to see.
Looking back now, I realize that the truth for me was too hard to face. I didn’t want to accept change, not even with my mother’s love and patience to guide me on the path of uncertainty. I stuck to my determined nature to persist in other ways and fortunately, having learned to touch-type, it has served me well in today’s age of assistive computers. But I can’t help wondering how much easier life would have been to put away my fear and take up reading braille in the early years of my sight loss. But, as the saying goes, it’s never too late to try!
Would you like to share your experience of learning braille? Did you feel it was a challenge? Did it open up your world? Please leave a comment here.