Maribel Steel is a writer, blogger, mother and singer who lives in Melbourne, Australia. As a person with Retinitis Pigmentosa, she believes her life is about learning to trust her other senses: to hear, to touch, to smell, to intuit, to love and to laugh.
Maribel was first diagnosed with RP at age fifteen and up until then, it seemed that she was only shortsighted and required nothing more than glasses. Her family had not suspected anything was radically wrong with her vision at that point, even though she could not see stars in the night sky, a symptom of RP.
The following is an excerpt of an interview with Maribel Steel by writer, Amy Bovaird. Full details are given at the end of this article
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 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.
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 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.
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 that specialise in helping people with vision loss, because they are there to offer support and valuable information – my little motto is ‘the squeaky wheel gets the oil’ and believe me, it really does!
Finally, be kind to yourself because you will most probably be your hardest critic. Trust your ability to be resourceful, even triumphant, as you face the challenges to see your life in a different light. And as my son, at the ripe old age of four, once advised me, “Don’t ever give up.””
For the full 3-part inhterview go to Amy’s blog: www.amybovaird.com
To learn more about Maribel Steel visit her website: www.maribelsteel.com
To read her regular blog posts go to: www.gatewaytoblindness.blogspot.com