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.  

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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...

Jaguar in the garden

Self-driving cars, bionic retinas, sight-restoring stem cells, gene therapy, talking phones. If there's ever a time to go blind, this seems to be it. There is so much hope on the horizon that it's tempting to put my head in the sand for a while and wait until science waves its magic wand. Or at the very least, drives me around in a snazzy car while I sit back, relax and enjoy the view with my Google Glasses...

However, when I saw a new consultant in San Francisco on Friday, she said it was very much time to be 'prepared'. My good left eye is going to go the same way as my right eye very soon. Apparently, Stargardt's disease is nothing if not symmetrical and my days of relying on my left eye are numbered.

So, alarm bells ringing and with a new sense of purpose, Steve, the girls and I went to a low vision conference on Saturday. We thought we'd save time by stopping by the venue so that I could register on our way to a friend of Sophie's birthday party. Bad plan. In our rush to get out of the house, we didn’t think through how Sophie would fare beyond keeping her at a safe distance from all the dogs, canes and the whizzy computer screens on display.

Predictably, Sophie’s eyes widened in terror when she saw the guide dogs (we're hoping her aversion to dogs is just a phase) and it was no surprise that she wanted to know what the canes were all about. But the look of panic when we reminded her that my eyes are bad stopped me in my tracks.

Since I was diagnosed with Stargardt's  a couple of years ago, I've spent hours agonizing over how different things will be for the girls growing up. I feel so sad that I won't be able to  read stories to them or see them smile, or help with homework, or catch a ball, do jigsaws, or help choose a prom dress if we're still in the US by then (and if they'd let me anyway!). But on Saturday, I suddenly realised that all of these things only matter if we let them matter. Now, more than ever before, there must be plenty of ways around them. Probably even an app or two. All Sophie and Alice need to know is that I'm fine, and as long as that's the case, then the rest will into place.

And it's also good for me to remember that while I may be dragging my heels about adapting to the situation, Sophie is far quicker off the mark. Not every toddler has to tell her mother what she’s looking at (apparently, we had a jaguar in the garden the other day), what she’s doing or how she’s feeling, but she’s taking it all in her stride. She’ll  even describe to me exactly what she's doing when she's being really naughty. For now, at least!

Hat shop

Sprinting to catch a flight at Vancouver airport on Friday, I asked a security guard where to go. He told me to read the sign right in front of me. I retorted that I'm visually-impaired.  Confused, he pointed at the sign again. With just two minutes to go until my flight was due to leave, I gave up and raced off in what looked like the right direction leaving him muttering about people 'trying it on' to get priority boarding. I'll bear that in mind for next time...

Then there was the very nice lady dressed in a bright red suit who greeted me in the lobby of my opthamologist's office last time I visited. So nice in fact, that she took my hand, led me to the elevator and rode with me to my floor. Still holding my hand (which was becoming more and more awkward by the minute), she told me to check-in for my appointment using the touchscreen computers which had apparently replaced the usual front desk staff. I explained that I might need some help navigating my way around the screen and she looked entirely bewildered. She made a hasty retreat and whispered to a colleague that I appeared to be 'visually challenged'. I couldn't help but wonder how on earth she'd managed to avoid dealing with 'visually challenged' people in a retinal disease clinic. And if she wasn't there to help patients like me, what on earth was the hand-holding all about?!

All very odd, but then I suppose that this transitional stage between being sighted and not is confusing - for me and everyone else. How can somebody who can run at full pelt through an airport be unable to follow directions? How can somebody read texts on her phone (in an attempt to forget about holding hands with a complete stranger) struggle to use a touchscreen computer? Why would she bother writing a shopping list when she complains about no longer being able to read her own hand-writing? Why does she insist on buying magazines she can barely see?

Recently, I've been experimenting with different ways of describing what's going on. I've tried on a few different hats for size, starting with the entirely nebulous 'horrible eye-disease' and 'terrible eye-sight' approach, followed by a brief attempt to brave no-nonsense labels such as 'visually-impaired' and 'low-vision' before retreating to the comfortingly meaningless 'almost legally blind'.

At some point, the blindness might speak for itself but now and in future, I'm so happy to have friends and family who don't seem to mind the ambiguity of it one bit: People who'll listen to me moaning about not being able to see ANYTHING. AT ALL. ANYMORE one day and still be happy to take me to see a ballet or an art exhibition the next.

Shifting sands

While the end destination is fixed, I have discovered that the journey towards blindness is haphazard and unpredictable. In my case, my sight is in the hands of the millions of tiny photoreceptor cells responsible for transmitting visual stimuli to the brain.

Stargardt's disease  creates a hostile environment for photoreceptor cells which gradually degenerate and die. If enough of them die at any one time, then I'm left with another  blank spot in my vision. And if the cells happen to be near the fovea, the sacred cow of sight, then the vision loss I experience is more pronounced and more disruptive. 

I don't usually think too much about the physiology of it all but I suppose it explains why I can see something perfectly well one day and then find myself frantically cleaning my glasses in an attempt to see it the next. 

Sometimes, the degradation is so subtle that I can blame it on tiredness (not unusual with a newborn baby) or hornones (ditto) or bad lighting. Other times, it's scarily obvious that something big just happened. Then it's time to begin adapting to the new status quo all over again. 

On bad days, it can feel like a game of musical chairs - getting up and starting again in the knowledge that there'll be one fewer chair to sit down on next time the music stops.

On better days, I know that I'm becoming far more proficient at doing some quick mental triage to work out what's changed, how it will affect me, and how I need to deal with it. I've learnt that it's okay to persevere with some things until the bitter end, that others are easily fixed with some resourcefulness, help from family and friends, or a piece of adaptive kit. And then there are other times when it's just fine to gracefully admit defeat... I never liked doing my tax return anyway.

Brain training

Last weekend, I tripped and fell quite spectacularly during a leisurely jog around the block. Five stitches and a cracked rib later, one of the nurses at the hospital asked if I was training for something. I haven't signed up for a marathon but I suppose I am doing training of sorts - training my brain to rely less heavily on visual information and to 'feel' my way around. 

Sensory compensation is a well-known phenomenon amongst the congenitally blind but what does it mean for beginners like me? My feet and my brain clearly weren't in the mood to connect last Saturday, but is it possible to experience and process the world using different senses?  Can I really rewire my brain? 

Until recently, I have been able to plug the gaps in my vision with lots of useful visual memory. Give me a visual clue and I'll fill in the rest. Lately, however, the gaps have become larger and the guessing game more challenging.

It's not quite time to learn how to use a white cane or to switch to screen reading software, but it's definitely time to find ways to prepare for my future while making life a little easier in the meantime.

Here's what I've learnt so far: 

...that it's possible to hear when a person is smiling, frowning or raising an eyebrow even when you can't see their face 

...that being organized and ordered is really important. If I don't put my keys, phone, wallet etc. down in the same place each time, then it's unlikely that I'll find them again

... that toddlers and tidiness don't mix. Said keys, phone and wallet may well end up in the fridge

... that sometimes, the simplest solutions are the best. Putting raised stickers on the dials of all our appliances has saved no end of frustration, shrunken clothes, burnt food...

...that the right lighting makes all the difference. And it can become quite an obsession as I turn lights on or off or angle them this way or that simply to chop a carrot...

... that pretending to look at a toddler's pretend spider is okay, but that pretending to read the words of a story won't be okay for much longer...

... that while I may feel stupid asking for help, most people are amazingly willing to read the things I can't see

... that it's actually quite interesting to 'see' the world through other people's eyes

...that none of these things truly compensate for not being able to see, but they're a jolly good start.

'Blinking on the Brink' is the story about losing my sight with Stargardt's disease. It's not meant to be a miserable read, simply an account of the day to day trials and tribulations as I make my way towards a new kind of normal.

A bit about me: I live in  California with my husband, Steve and our two daughters, Sophie (two) and Alice (two months). We moved out here a couple of years ago from England and we still can't quite believe our luck that it only rains a few times a year!  Life is pretty hectic with two tiny children at home but in rare moments of quiet, I love art and music. I'm not sure how my art history degree led to a career in market research and branding, but it's been a fascinating decade spent traveling the world while working with some great brands.

I was diagnosed with Stargardt's disease in 2010. I vividly remember struggling to see a painting in a London art gallery and wondering if I had put my contact lenses in the wrong way round by mistake.

It turns out that I was in the early stages of Stargardt's, a genetic retinal disorder which affects the macula, the part of our eyes we use to see detail like print or people's faces.  Stargardt's causes progressive vision loss to the point of legal blindness and beyond. 

The world hasn't gone completely black, rather fuzzy in the middle and a bit weird around the edges. I don't have a cane or a dog just yet. Those will come in time. For now, it's about getting used to seeing without seeing - filling in the gaps, piecing together snippets of vision into something that makes sense.

My days are spent wondering whether that really was a man skating past wearing nothing but his inline skates; whether those really were poodles being pushed along in a double stroller. Only in San Francisco!