Monday, April 15, 2013

'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!


2 comments:

  1. Interesting stuff brave Mrs T. Keep on scribbling xxx

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  2. We're rooting for you from NYC Claire! Naureen, Matt & family

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