As a result of seeing my guest article, Writing Blind, on MNISB, an author from the US got in touch. Amy Bovaird was inspired to read that we share the same eye condition (Retinitis Pigmentosa), and asked if I would do an interview for her blog readers.
Delighted – sure!
Shortly afterwards, I received an email from Stella de Genova. She had seen the interview and now wanted to include me on the blog, Vision Through Words. As co-founder of the website with Jeff Flodden, they invited me to be their Creative person of the week –
So today’s diary entry is a blend of these two interviews. The beauty of being a guest writer is the warmth and support other creatives offer to each other! And the friendship we continue to share…thank you so much guys!
When were you diagnosed with Retinitis Pigmentosa (RP)?
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.
Can you describe a little bit about what the doctor said, how he broke the news?
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 mold 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.
Did you go through any unusual treatments for your Retinitis Pigmentosa?
Ah, now this is an interesting question. In my unpublished autobiography, two chapters focus on the unusual treatment I received when I was seventeen.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 (Apitherapy), 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.
In 1978, my father Brian 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.
Can you talk about some of your biggest challenges ?
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 were 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.
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!
Do you have more vision-impaired friends than sighted ones?
I Have many visually-impaired or blind friends. I love the relaxed nature when we exchange tales of our adventures and the fact that we truly understand how hard it can be to function in a sighted world. I treasure these friends and yet, it is true to say, that I would be lost without my sighted friends and family who are the backbone to my life.
My children have encouraged me to never give up: my family have learned the fine art of knowing when to let me try things by myself and when to jump in to rescue me.
My blind friends are my comrades, my sighted friends are my fans!
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!
What advice would you give someone who has been newly diagnosed with RP?
To anyone who may be diagnosed with RP, it is natural to expect that you will grieve for the loss of sight. Share this grief with a close friend or partner who can truly listen to what you are going through.
You may initially feel your dreams and aspirations have all been taken from you and it will take time to adjust to a different way of being. The key in dealing with such a daunting future, regardless of age, is in accepting the limitations and reaching out to others so you can feel really supported on the challenging road ahead.
Be proactive in seeking out technology and other aids that can help you maintain a sense of independence – you might be surprised at the amount of helpful gadgets out there. Approach agencies, like Vision Australia and VisionAware (AFB) that specialise in helping people with vision loss, because they are there to offer support and valuable information.
One of my mottos, ‘the squeaky wheel gets the oil’ has taught me to SQUEAK away loud and clear, try it – you’ll be surprised how effective you can be!
Finally, be kind to yourself because you will most probably be your hardest critic.
Write up a list of your strengths and acknowledge your achievements. Trust your ability to be resourceful, even triumphant, as you face the challenges to see your life in a different light.
As my son, at the ripe old age of four, once advised me, “Don’t ever give up.”