Stanley & The Staircase To The Light
I am a survivor. I tell myself this every day, so it must be true! When I found out I was losing my sight, I was devastated, but although it was a harrowing and speedy process, it was not the worst thing that had happened in my life. Having gone through worse and survived, I knew I possessed the key to letting myself out of this dungeon and I knew the staircase to take to see the light again (pardon the pun!)
The first sign I was losing my eyesight was a rare cataract condition resulting from damage inflicted on my eyes as a child. After operations and exploration of the nerves, it was discovered that I had an additional, rarer condition: juvenile macular degeneration, rods and cones dystrophy. Instead of viewing the world through rose-colored glasses, I view the world through a blue lens, with black polka dot spots! (I still see through rose-colored glasses metaphorically, though.)
It was extremely hard for an independent person like me to adapt to the seeming lack of freedom when sight had deteriorated such that I was provided a white cane by Vision Australia. I absolutely detested asking for help. My daughter helped as much as her busy life allowed, guiding me on her arm whilst I used the cane (Stanley) to navigate uneven ground surfaces. Why Stanley? Because I couldn’t stand ‘him’ but essentially, he led me around, plus a reference to black and white era comedians, Laurel & Hardy (Stan being the extremely skinny one!) A very wise woman had recommended naming your cane. It makes it more personal and like a member of your family, whom you need to accept.
We had planned a trip to Disneyland because my daughter missed out on another trip, so this was to be our time together. Little did we know that by the time we left Sydney, I would not be able to see beyond 10cm from my face. Working our way through those throngs of bodies, everyone out to get to where they were going as fast as possible, is a story in itself. I was so grateful that I had a solid body to hold on to and that Stanley announced that I could not see ahead of me. It made it so much easier for others to accept that I had not walked into them deliberately or bumped them with intent. When people are rushing (especially in huge crowds), there sometimes isn’t even the time to apologise properly, so a glance at a cane alleviates this courtesy.
Needless to say, my favorite ride was Space Mountain (which is set entirely in the dark). I could really enjoy that one as I could relate! The non-vision impaired screamed in terror, I just screamed because the sensations of going through space without seeing what was ahead of me was so eerily familiar! And because I was strapped in, I felt safe and it was fun when compared to the unpredictability of day-to-day travel.
Having lost the use of my sense of sight to a large extent meant that I really had to use my brain. I am beyond thankful that my memory still functioned and I could work out where to go using logic when I couldn’t see. I learned to really listen for train station names and sounds after missing my (extremely well-known) stop so many times because I couldn’t recognise it anymore. Trying to ask for directions (or even just to find out where you were) was problematic in a city of 5 million people; no one has patience or time for you, however, at one glimpse of the cane, people were immediately more forgiving and accommodating.
I realised I had to stop working when I didn’t see clear glass and broke many beakers in my laboratory at work. There was a bit of an existential crisis when I realised I couldn’t work as a scientist – “Am I still a scientist?” I need to transition to theoretical science rather than conducting practical experiments. Or retrain altogether, in a different field.
Every day is a challenge but as time goes by, it becomes the norm as you get used your new way of being. And it is not so bad, as many unexpectedly good things have come from being differently-sighted. I now regard it as a blessing. I have gained so much more in terms of valuing life and experiences. At the conclusion of each day, I give thanks that I was privileged to experience it, no matter that the shape and look of these days is different to all those previous years.
Image: Silvia (white cane in hand) and her daughter (wearing Mickey Mouse ears) are posed standing in Disneyland.
I met Silvia on Instagram and was immediately captivated with her photography. Not only does she take breathtaking photos but her descriptions are sublime. You can connect with her via @silviasalzburg to enjoy her craft.