Big Red Stroller

I was six months pregnant when I was diagnosed with a macular degenerative disease called Stargart’s. For some reason, it didn’t really sink in that I would gradually lose sight of my children, despite significant vision loss during and after both pregnancies. The consultants I saw at the time had high hopes for a comfortingly gradual deterioration. 

Now that the girls are one and three years old, it’s difficult to ignore the stealthy smudging and blurring of their beautiful faces as Stargardt’s takes hold. It’s hard not to wonder how life will be once the last shreds of vision have disappeared. And It’s difficult not to feel the poignancy of teaching Sophie to read while I learn to do without, or watching Alice exploring new horizons while mine grow fuzzy around the edges or disappear altogether.

Fortunately, young children don’t leave much time for any kind of contemplation. Instead, we just get on with adapting to what is quickly becoming our new normal. 

Sophie instinctively knows when to fill in the gaps with vivid descriptions of what she’s doing and how she’s feeling, or where she thinks Alice might be hiding this time. Alice is still oblivious but follows her big sister’s example and brings me things she wants me to se. Which, in Alice’s case, could be anything... 

For now, neither of the girls mind wearing brightly coloured, stripy clothes so that I can keep track of them at the park. They’re over the moon when Steve reads to them instead of me, and they still believe that we can go anywhere we might ever need to go in the ‘big red stroller’. They’re perfectly happy playing catch with a ball so big there’s no chance I could miss it, and Sophie is excited about riding the yellow bus to school when she’s bigger.

I’m sure there will be some bumps along the way as the girls grow, life changes and my vision worsens, but for the moment, we seem to be doing just fine.

Talking computers and magic pens

I have just finished the first of several online courses I need to take before I can begin my psychology degree in August. It’s a drop in the ocean compared to five years of studying, multiple internships and 3,000 clinical hours required to qualify as a clinical psychologist but it feels like a major achievement.

Who knew that I’d start the course with every intention of powering my way through the textbook in record time and end up relying on my computer to read me every word very very slowly. And I soon gave up on writing notes when I realized that I couldn’t decipher my own handwriting no matter how neatly I wrote, or how many bright lights I enlisted to help. 

 Each chapter of the textbook seemed to coincide with yet another chunk of vision loss and a gradual recognition that the dreaded ‘accessibility’ tools I’ve tried so hard to avoid using so far might actually be my saving grace if I want to do what I want to do.

It’s extraordinary how quickly things changed. For the first few weeks, I enjoyed sitting in a cafe reading my new textbook and occasionally tuning into interesting start-up conversations going on around me. Progress was slow but I thought I’d soon pick up the pace. Then it dawned on me that, thanks to my newly-honed sense of hearing, I’d probably learnt far more about how to pitch new tech products to investors than I had about abnormal psychology. Maybe a quieter cafe would do the trick.

That’s when the obsession with lighting began to get in the way. When I broke into a cold sweat for the third day in a row because somebody had taken the ‘best’ table by the window, I admitted defeat, had my book scanned and read everything on my laptop. I mourned the loss of turning the pages of a physical book but at least I looked the part in Silicon Valley. I even plugged in my headphones for good measure

Just as I was getting into my stride, I started to see things on the page that weren’t there. I thought I’d escaped the curse of the visual hallucinations that can accompany significant vision loss but Charles Bonnet Syndrome, as it’s called, was here to stay. It’s one thing losing one’s sight; it’s quite another seeing things that simply don’t exist. For a while, I felt as unhinged as some of the case studies I was reading about in my textbook. I’ve since learnt that I’m lucky I don’t see some of the creepy things that other people see but the doodles and scribbles that kept appearing on my page were aggravating beyond belief.

So, I made the leap and learnt how to ask my laptop to read to me instead. Easier said than done. Imagine listening to a GPS device reading to you for hours in a monotone and you’ll be close to what it’s like. I’m really glad I studied languages at university because seems to take a degree to understand what on earth it is saying when it spells out words rather than saying them, speeds up and slows down at whim, and seems entirely perplexed by the word ‘psychology’.  

Anyway, I got an A on the course and I’m onto the next. This time, a new format and new challenges. Accessibility doesn’t seem to go hand in hand with flexibility and none of the tools I was becoming so accustomed to relying on seem to do much to help. 

On good days, I have high hopes for the magic pen that purports to convert handwritten notes to text and then read them out loud. But other days, I’d love to do the simplest things without an increasingly sci-fi amount of kit in tow.