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!