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Did you go through any unusual treatments for your Retinitis Pigmentosa?
Ah, now this is an interesting question, Amy. In my unpublished autobiography, two chapters focus on the unusual treatment I received when I was seventeen. In the 1970s, my parents were astonished to read an article in the British /Observer/ Magazine, reporting a remarkable ‘cure’ for sufferers of RP. The treatment involved the use of specially medicated bee venom applied daily by bees, which allegedly worked internally on the patient’s glandular system. Several patients claimed the treatment had improved their sight and this was also corroborated by a prominent specialist. My mother insisted we pursue this avenue of possibility as every other door of hope was closing rapidly. It took two years of letter exchanges between my father and Mrs Owen, the bee-lady of Bromley, to grant me a place on her waiting list.
In 1978, my father flew with me to England where I received a daily dose of bee stings for six months. Naturally, the stings were painful, but it seemed necessary to endure, as we clung to hope and prayed for an improvement in my vision. In a bizarre turn of events, it became more difficult to deal with Mrs Owen’s persistent and fanatical insistence that my eyes were improving, when clearly they were not.
In Australia, my mother was facing her own traumatic fight against cancer (which she had kept secret from the children) and although my father flew home to be by her side, she died while I was still receiving the treatment she had so desperately prayed would cure her little girl. The story of that year is a complex one and I hope to self-publish my collection of short stories in the not too distant future, including the events of that year entitled, /Secret of the stings./
/Readers may be interested to read my father’s indepth account at:/
Can you talk about some of your biggest challenges, and any that you’ve overcome?
I think challenges are a part of everyone’s life, big or small, whether you are blind or sighted. The real challenge is not so much the situation that can completely halt you in your tracks, but choosing a positive outlook to find an alternative route when it might be easier to give up. Sometimes life requires determined action and at other times, it requires a gentle grace to accept one’s limitations. I try to find humour in the frustrating moments but this often occurs after the event!
Being a vision-impaired mother when my four children we re growing up was a major challenge. I often felt inadequate and held back tears of deep frustration not to be able to guide my children like sighted parents can: to point out letters on signs, to read bedtime stories from a book, to drive them to parties, to watch out for their safety in the park or at the beach, to tell them when it was safe to cross the road. Instead, it became a natural routine for my children to be their mummy’s eyes. I learned to draw on my strengths and at other times, lean on the kindness of others without feeling guilty.
Two other major challenges I am proud to have overcome were obtaining my qualification as an Aromatherapist and Masseur and surviving the rigors of guide dog training – /His guiding eyes/ can be viewed on my blog:
What is your everyday life like now?
Unpredictable and full of creative projects, with a fair share of freedom and responsibility. Freedom to write my short stories and pursue adventures with my spontaneous partner Harry: and responsibility as mother to my fourth teenage child, Mike. I enjoy being independent and travel locally using my trusty white cane which I have found to be my magic wand of power. It seems to not only sweep a clear path through human traffic but brings much kindness from people wanting to assist me. It has taken a lifetime to accept things graciously at those times when it is just easier to let others help and the warm feeling is reciprocated.
I have learned to use adaptive technology for the blind (JAWS for computers) and spend my writing days thrashing out stories for writing contests and for my blog. I am both amused and annoyed by the blind stereotype others assume my life to be, so in response, I write storiesfrom the heart to share in the world unseen. I love to travel with audio-descriptive Harry and observant Mike and discover new places that delight my other senses by feeling the landscape in a very sensory way.
There is another string to my bow that gives me great pleasure and that is being a soprano vocalist. Harry is a fine musician and composer, who manages his own recording studio and I am sometimes asked to sing on a client’s CD for backing vocals or to sit in as ‘big ears’ to listen to the mixes – as I am known to hear subtle glitches that can be removed before the final mastering. I really love this work and being involved in Harry’s music projects.
How does your community provide support for you?
Melbourne is a vibrant city which I am pleased to say has made a huge effort to include people of all disabilities by providing good access to public places. Also I am often pleasantly surprised by the kindness of strangers who go out of their way to help me locate the right building or the right door or the right tram. My magic wand (white cane) attracts generous people almost every time I venture out of our front door! Workmen don’t yell at me if I accidentally tread on their wet cement, not having red the sign of course, and no one says a nasty word if I jump the queue in the bank: most probably my recompense for having bounced my way from pole to pole trying to figure out the way through their sighted maze!
I also enjoy many benefits such as free public transport and my friends love my ‘companion card’ giving them a free ticket for anyone who escorts me to a music concert or art event.
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Coming next: Maribel talks about friendship and offers some inSIGHTful advice as we wrap up the interview.