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.

Back to school

This time of year always reminds me of going back to school and this year, I’m preparing to do just that. I’ve sharpened my pencils, bought some shiny new textbooks and begun training to work as a volunteer on a crisis hotline. It’s the beginning of my adventure retraining as a clinical psychologist.

So far, so good but it has been far tougher than I had anticipated. I knew I might have to dust off the cobwebs having not studied for an awfully long time. I was prepared for the challenge of learning how to learn in a different way now that I can no longer read. And I knew that I would feel ancient compared to my bright-eyed and bushy-tailed classmates.  

. 

What I hadn’t expected was to keep bumping into my visual impairment so often and so subtly.The whole experience has taken me straight back to those first few nerve-wracking days of ‘big’ school - being the new girl in a new place and not even knowing where my classroom is.

I thought I’d got off to a good start at the first hotline training session but no sooner had I congratulated myself on walking up to the teacher and announcing that I am visually impaired (it still doesn’t roll off the tongue), when I tripped up. I couldn’t see my name badge, sign my name on the register and I had absolutely no idea what it said on the whiteboard under the headline; ‘ Critical Information For All Volunteers’. Next came the ice-breaker which involved reading the date on a quarter dollar coin... and so it went on.

By the end of that first class, I was ready to throw in the towel. I could have wept when everyone else jumped into their cars and sped off into the night while I waited for a train home.

But it has improved immensely since then. I’ve come to the conclusion that all of these minor aggravations are par for the course while I get used to my new situation. I hope that the second and third time they happen, they will simply fade into the background.  

Now I’m half way through the training, I have it down to a tee. I listen to all the presentations ahead of time and rather than feel stupid and incompetent, I allow myself to feel vaguely smug when I know all the answers before the teacher even asks the questions. 

I wish the same could be said for my statistics coursework. That is very much still work in progress...

Music and wine

I sat and listened to Japanese pianist Nobuyuki Tsujilii play Rachmaninov's second piano concerto at the Proms last weekend. He's complerely blind and completely amazing. In a way, it was incredibly inspiring but it also left me feeling daunted.

It's not that I want to be a concert pianist when I grow up... It's more that I feel like a complete novice at becoming and being blind. I keep forgetting that I can't see things and I keep forgetting that I'll never be able to see them again, not even on a good day. It  still comes as a shock every time I have to tell somebody that I'm visually-impaired, and I can't quite believe that I'm going to have my first lesson with my very own white cane next Monday.

Far from Nobuyuki's brilliance, it's easy to feel a bit mediocre as I dither in grocery stores trying to decipher packaging that I once used to help brands design, or wonder whether or not to smile at people I pass in the street just in case they're somebody I know, or spend ages plugging my credit card details into a website before the computer says no and I admit defeat.


That said, I'm getting pretty good at bluffing my way through situations.  A friend who I haven't seen for a while said that the only thing that has changed since last year is my newfound ability to pretend to see everything perfectly well. She's right. It's amazing what you can do by the power of deduction (although I got caught out the other day at Google when everyone seemed to be wearing the same shirt as Steve... ). And auto-pilot is a wonderful thing. Pass me a wine glass and I'll fill it with the perfect amount of wine every time. Without even looking.

Don't forget to turn the light on

The thing about young children is that they make you realize how time flies. Sophie is two and a half going on twenty two and Alice isn't far behind. It's so exciting to watch them grow but it's equally terrifying to think about how different things will be for me in a few weeks, months or years time. It's also far too easy to mourn the loss of things I could do a few weeks, months or years ago.

Work has been on my mind for a while now. What can I do and more to the point, what do I feel I can no longer do? Can I slot back into my old job and would I want to? Would it be easier to go back to something I know and simply adapt to the new situation? Or might it be better to try something different so that I'm not forever reminded of what has changed?


Just as I was heading into broken record territory (poor Steve!), I suddenly had a revelation.

It happened soon after I went to see somebody at the low vision rehabilitation clinic I've ben referred to. The guy I was meeting was there to teach me about adaptive technology but he also took it upon himself to warn me off seeking employment without an employment lawyer on hand. He lost his sight very suddenly ten years ago and told me how his boss had sidelined him until there was nowhere else to go but home.

The story scared me rigid, but it also galvanized me into action.

Funnily enough, the thing that got me going the most wasn't the fear of something similar happening to me. It was more that he hadn't bothered to turn the light on when we went into a dark room for our meeting.

There have been plenty of times when I've wondered whether or not I'm wearing my sunglasses, so I know why it happened, but it made me think about how much I want to feel that I can stay tuned to everyone around me and, I suppose, to stay 'normal'.


Next came a few weeks of soul-searching and thinking about what sort of work I might want to do in future. I thought about how much I enjoyed my old job and also about how excited I felt about using what's happening to me as a watershed - an opportunity to try my hand at something else.

And I think I've decided what I want to do next. It's a big leap from consumer insight into clinical psychology. I've done lots of research, been to a few grad schools around here and have spent many hours wondering how on earth I'll be able to go back to studying at my age... and how I can make it work without even being able to read. I can't imagine that statistics or abnormal psychology text books will be particularly thrilling when they're read by Alex, my screenreading software friend. And why do the colleges that do the program I'm interested in have to be miles away or half way up a mountain now that driving is no longer an option?

 But, with lots of encouragement from everyone, I think I'm going to take the plunge. It turns out that my achilles heel probably won't be my blindness,  more like my abject fear of maths...

Disappearing Act

There is something very odd about not being to see my own face in a mirror. Vanity aside, I've realized that I used to use my reflection as a barometer of how I was doing, or how I was feeling. These days, I'd probably just see corroboration of the perpetual state of tiredness that comes with a new-ish baby and a naughty toddler. But in the past, I might check that I felt the part before launching into a room full of people at a party, or give myself a pep talk before a big presentation at work.

Steve took a photograph of me recently which I was able to see pretty well, for once. It was a surprise to see myself again and I thought that I looked different somehow. Maybe I do (more wrinkles, more bags under my eyes...) or maybe,  I've just lost that easy familiarity with myself after months of distorted reflections. Regardless, it struck me how unnerving it is to become invisible.

Of course, I  worry about looking silly too. I'm sure I'm not the first mother to walk out of the house with Mickey Mouse stickers stuck to the back of my trousers (thanks, Sophie) but I've heard that there is a tipping point which takes people by surprise. Just like I 'lose' the cursor on my computer screen, I might miss something really obvious.

I remember meeting up with a woman in her seventies who also has Stargardt's. She was impeccably well put together and her house was beautiful too - both of which were immensely comforting to me at the time. She told me about the occasion when she dressed for dinner on the last night of a cruise in the Caribbean. She emerged from her cabin resplendent in all her finery and was greeted with a chuckle. Her husband said it might be a good idea if he 'fixed' her face.

Her solution was to have permanent make-up applied so that there isn't any room for user error. It seems a little drastic, but I can see her point. Who knows, I might end up looking better than ever before. And why stop at make-up... How very Californian!

Old dogs and new tricks

So, tomorrow is the day I have been putting off for ages. It's the day when 'The White Cane Lady' comes to my house to begin 'Orientation and Mobility' training. Otherwise known as learning how to get around without bumping into things.

I'm not sure why it's such a  big deal but I think it's because it feels like the beginning and the end all at once.

Who knows how it'll go with me, the white cane and Alice in her stroller... but everyone has to start somewhere.

Wish me luck...