I met Maribel Steel through a guest post she blogged for a writing blog called “My Name is Not Bob.” He had introduced her as a blind writer using adaptive technology. I somehow knew even before I read the words that the cause of her vision loss was Retinitis Pigmentosa. If you are interested. take a peek at the interview here: http://robertleebrewer.blogspot.com/2012/05/writing-blind-how-blind-people-manage.html
From the interview, I went to her website and read through a few of her posts, and thought, “We are kindred spirits!” Maribel views vision loss as an adventure, too! She is really the first real friend I’ve made that suffers from RP. Even though she lives halfway around the world, email brings us together as we shareour aspirations for writing and our experiences with RP.
I asked her if I could interview her for my own blog. I am excited to introduce Maribel Steel as my first guest blogger. This will be the first in a series of three posts this week so don’t miss her story.
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Maribel, can you tell me a little about your background?
The first five years of my childhood were spent growing up in a small town not far from the standing stones of Stonehenge. My mother, Piluca, was born in Madrid and came to England to work as an /au pair/(a children’s nanny) for a couple teaching in Cambridge. She met my father, Brian, at a Scottish dance when he was studying languages at Trinity College. Within a short time they were married, with two youngsters, Paul (1958) and me in 1961. When I was six, we migrated to Australia, where my father had secured a job as a Spanish Lecturer at Monash University in Melbourne.
What was it like growing up in Melbourne?
My childhood was a happy one, and one of the things I liked to do was to follow my older brother around a lot as he always dreamed up fun things to do. I was influenced as a young artist by my mother’s talent for the arts as she shared her fine drawings with me. Mum decorated our modest home in vivid colours in the furnishings and wallpaper with particular flair. Our home was alive with the sound of music as my dad was very fond of his record collection of popular world music. I think this influenced my love of singing and developed a keen ear for harmonies.
When were you diagnosed with Retinitis Pigmentosa?
These two strange-sounding words didn’t enter my vocabulary until I was fifteen, and even then, I didn’t understand their meaning. Up until this time, I was a ‘normal’ girl who loved to draw, to ride horses, to read and to hang out with my girlfriends. It was a routine check up at school that alerted my parents to seek specialist advice, and it seemed that I was shortsighted and required nothing more than glasses.
Did you suspect anything was radically wrong with your vision at that point?
Not really, even though I could not see stars in the night sky, a symptom of RP. The only thing radically wrong with my life was the onset of puberty – and all the changes that took place. I felt incredibly uncomfortable with the new image emerging before the teenage mirror. I resisted wearing the new glasses because they made me stand out as being ‘different’ from the other girls at school. I preferred to remain camouflaged while I worked in class but my ability to see words on the blackboard began to blur, as the letters merged into a chalky haze. We were not prepared for the shocking diagnosis that followed a two-week stay in hospital. It was a time fraught with uncertainty, painful tests, intrusive eye examinations and a yearning for normality to return to our lives.
Can you describe a little bit about what the doctor said, how he broke the news? Did he give you any hope or offer any support?
As my parents took me to seventeen specialists to confirm the diagnosis that I was going blind, the news filtered into our lives over a period of time. My parents were devastated with the final diagnosis and I personally felt confused. On one hand, I was still the same person, yet on the other, I had been cast into a different mould by the specialists and was to accept the new label, ‘legally blind’ – even though in my own way of thinking, I was not blind at all. There was very little emotional support from any relevant agencies, and it felt like we were cast adrift on our own rickety raft on the vast river of uncertainty, to sink or swim. I became resourceful and determined to keep up with school work: thick Texta pens replaced the biro pen, a magnifying glass and tape recorder helped to take notes in class but by the time I reached the age of seventeen, I could no longer read with prescription glasses.
My parents did everything they could to make my life easier by purchasing equipment to enhance my ability to see, in particular, a CCTV that enlarged the text of books on a black and white monitor. They also ‘spoiled’ me with lovely things that perhaps cushioned the blow and gave me other interests to focus on in my spare time, like a lavish stereo system to encourage my passion for singing. I just had to keep reaching for those scholastic goals even as career choices became few. The last thing I was willing to do was to see myself as a ‘blind’ person: the image simply did not suit me. I rejected the offer to learn Braille, opting for touch typing instead.
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Coming Up Next: Unusual treatments Maribel underwent to “cure” her RP, everyday challenges and successes.