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!