Though I had spectacles, they did not correct my vision, but provided minor assistance for me to “rest” my eyes from the lenses to watch TV and go to the toilet at night etc. I usually sat about 6 feet back from the TV where I could still read the TV menu, though there was still lots of double vision.
But one night, I noticed that I couldn’t see the menu anymore. It was blurred out, distorted and tripled over.
I ripped off my spectacles and cleaned them fiercely with my shirt.
I sat there stunned as I recalled that feeling. It was just like the time in 1998 – more of my vision felt like it had just vanished, just “dropped away”.
I wanted to cry, but instead I stomped upstairs, mumbling that I didn’t feel like watching TV anymore, leaving the kids confused.
“I can’t see it anyway,” I said over my shoulder. I closed my room door and cried warm tears into my pillow.
The days literally were a blur after that.
A blur of doctor visits to try new kinds of lenses; tests to see if anything else was causing the deterioration; a blur of confused doctors who insisted that “this does not usually happen”; a blur of TV images that I now viewed from 1 foot away; a blur of colleagues that I had to explain to about my visual impairment- why I might not recognise them at times and why I had suddenly stopped attending many functions.
I felt completely alone and isolated because I knew no one could understand what I was going through because they could not understand how I see.
I thought about calling an organisation that would understand - like the RNIB and was glad when I finally mustered up the courage to call them.
The RNIB referred me to a counsellor who called me once a week. We discussed everything from the emotional trauma of sight loss to safety. When I told her I felt like I needed a symbol cane (a short white cane used to highlight a visual impairment, but not used as a support aid or to detect obstacles like kerbs or steps) she encouraged me to do so. She explained that this was in everyone’s best interest and for my safety – so drivers and pedestrians alike could be aware, which was only fair.
Emotionally, she was a God-send. She made me feel incredibly grateful for what vision I had remaining by telling me her story.
During the first few sessions conducted via Skype, “Stacey” seemed normal – by that I mean fully-sighted. But one day, she explained that she knew exactly what I was going through because she had also worn painful contact lenses…before...
Before…when she had eyes!
I was stunned silent as she explained that she wore prosthetic eyes now and I instantly felt unjustified for my complaining.
But of course, Stacey validated my fears and distress. She delicately allowed me to shed my need to be everything to everyone, to be super human and to just BE HUMAN.
She allowed me to cry, to feel scared of things I heard but could not see, to be angry that I wasn’t getting the treatment I needed, to be frustrated that people could not understand this experience, to be afraid that someone might hurt me if they knew I was visually impaired, but she also assured me that the opposite usually happened and she allowed me to accept that it was okay to not be okay.
She assured me that I could be vulnerable, but that my cane, nor my visual impairment meant that I was weak. And in many ways, accepting my current situation (cane and all) and dealing with it, would empower me - from dealing with people to being more safe and independent.
I was still incredibly embarrassed when I got my symbol cane, but Stacey was right - the benefits quickly became apparent.
Once, while grocery shopping, I had my symbol cane out to indicate that I was visually impaired just in case I bumped into anyone accidentally. But when my eldest daughter insisted that I didn’t need it, I put it away. In hindsight, I think she was embarrassed during those early days as well.
Anyway, when I got to the checkout counter, I thought the cashier was looking at me strangely but of course I could not see her facial expressions. The cashier quickly clarified this for me though, “Can’t you see this is the express lane?” she snapped.
I looked towards my daughter, annoyed with myself for listening to her because had I had my cane the cashier would have understood my mistake.
“Actually, I can’t see that sign. I’m visually impaired.”
The cashier stuttered an apology and insisted she check me out.
That encounter made me realise that I would have to be my own advocate in this challenge. So, I started doing massive amounts of research. I longingly looked at CCTV’s and magnifiers, but the prices were exorbitant. Eventually, I found out about a government program called Access to Work that provided grants for disabled, self-employed people. These grants could be used for equipment or training to help people remain employed and independent.
I was surprised by how quickly I received a response and with the professionalism of the staff. Within two weeks, an assessor visited me. Initially I had expected to qualify for a magnifier and I was pleasantly surprised when he informed me that there were much more equipment and services that I qualified for. In the end, I was provided with speech to text software, an e-reader, CCTV, a magnifier and other visual aid gadgets.
I also found the local vision support organisation, Warwickshire Vision Support, who provided a rehabilitation officer to visit me. After describing what my vision was like to her, we decided that it was best that I use a guide cane because I needed to be able to find curbs and steps because I have no depth perception. Basically, I see in 2D and my vision loss had a drastic impact on daily life.
When I fell down the stairs, three times, we had to place bright coloured tape at the edge of the stairs. I burnt myself cooking because I could not judge the distance of my hand from the pot.
Though this was a difficult adjustment for me, it was also difficult for the children. I had always been the personification of a “supermom”, but now our roles had also blurred and they had become my carers.
My eldest daughter, Alia, typically attended business meetings with me to read train schedules and to highlight people’s behaviour because I could not see their facial expressions. She was a funny sighted-guide though and I often laughed as she stood at the bottom of the stairs screaming at me to stop looking down.
And somehow, I managed to see the humour in it all.
I got it.
I got that she could not possibly understand how scared I was of missing a step. And what was even funnier, was when she herself missed a step. I understood that the last thing any teenager wants is to accompany their parent to boring business meetings and spend chilly winter days, reading train schedules and navigating through busy train stations. But the important thing was that she did it anyway.
I got that they could not understand how noises become terrifying when you cannot see what’s rustling in a bush or how close vehicles are.
I got that they could not conceive how terrified I was when the jacket hanging on my bedroom door looked like a dark, shadowy person there.
Nor could they understand why I screamed in horror when I entered a dimly lit room and Muna, my curly haired girl, looked like the monster from that movie The Village because she had piled her hair on top of her head and my eyes distorted her face.
Nor could they understand the time when I did an Olympic jump from the living room to the kitchen because there was a huge spider on the floor that turned out to only be a leaf.
We laughed at those moments, but they were all genuinely petrifying for me.
And then there were those tender moments, when even my 9-year-old, Sumayah, became my eyes as I walked her to school. Together, we navigated busy roads and traffic, with her gently telling me to “step up…step down” and gently reassuring me that the person approaching didn’t look mean and no, that was not a snake but a doggie in the bushes.