The next two years were hellish, my vision deteriorated so quickly, I became clumsy, I became withdrawn, I said goodbye to so many things I could do while being deaf.
Team sports went, I was devastated about that, but I never know when I’m beaten so decided on a few other sporty activities I could do alone, I have become a master of strategy, it’s the only way to cope with everyday life.
It was at around 13 that I began experiencing dizziness and headaches, major issues with bright lights and glare.
Bright sunshine and white clouds are unbearable so I wear the darkest sunglasses that still look trendy, trouble is when I do my eyes are protected by the dreaded rays but I can see even less because of course with RP we are nightblind!
By 14 I couldn’t cope at my mainstream school, I spent most of my time falling over, covered in bruises and the support was poor and as I was the first in my area with usher syndrome in education I was the guinea pig. It is my biggest regret that this school did not do what my parents wanted by way of support, I loved it there and the next school I went to was of my choice but the biggest mistake I ever made, I have no good memories of that school.
At 14 my Mum braved it and told me about my condition. I didn’t really understand until some time later when I researched on the Internet; and slowly the reality was sinking in.
I was registered blind (severely sight impaired) at 14 and in that year / 18 months it was as though a light had been switched off in my life.
I was surrounded by deaf kids all getting on; doing lots of the things I enjoyed but could no longer do, they were also often unkind toward me, doubting my condition, really knowing no better – I hated being in this environment and yearned to be with my friends from mainstream.
I challenge myself everyday; and I have learnt the hard way that awareness of my condition is rare; and so at each and every opportunity I have I publicly speak about life with usher syndrome.
It all started after realising how little even those who professed to be usher aware actually knew!
Access is the name of the game. I need decent light conditions, and an acoustically friendly room. Modifications to text are needed and I need access to a computer with good accessibility programme. It’s all very doable at to those, apparently aware this should have been done without issue, it wasn’t!!
I would come home at night very upset that I couldn’t access lessons or work sheets. That difficult kids wouldn’t allow me to sit where I needed to; yet they knew all about usher syndrome!
To continue to the final part of Molly Watt’s inspirational story, CLICK HERE