I was born with Usher Syndrome in 1960, I'm born Deafblind but it wasn't properly diagnosed until I was 28.
I had hearing aids from age 9, I was clumsy, I was going blind even then and I was told I was slow as I didn't speak very much and I was bullied.
Growing up was very difficult, life was hard from the beginning.
I have never written a blog before but I'm very upset with the media reporting wrongly about usher syndrome making it sound life is fun and easy.
I have fought all my life to explain what Usher Syndrome is for some journalists to get it completely wrong.
I am deaf, I wore hearing aids to access sound for 30 years and as a result I can speak.
My hearing got worse with age and 5 years ago I was lucky to get a cochlear implants.
I am not miraculously cured of deafness I am still deaf I am just able to access sound.
My blindness was with me the day I was born but progressed slowly and I have been registered partially sighted for many years.
Dual sensory loss is not fun, it is hard to live life always needing to explain personal needs, hard enough without the press not researching the condition, getting wrong and making it sound like everybody with usher syndrome is having fun being Deafblind - it is not fun and I find reading nonsense or being told how I should be based on the nonsense these people write, upsetting and demeaning.
If anybody is interested the only thing on my wish list is for people to understand the condition..
Sorry to vent my frustration
Down the loo or in the nettles at the end of the garden: from the age of 3 my top two destinations to hurlmy detested hearing aids.
Painfully shy, diagnosed profoundly deaf and devoid of much speech, I took every opportunity in venting my fury at having to wear such instruments. I mean, have you SEEN those things we had to wear back in the 70s? Worn on a harness with huge wires travelling from chest to ears that shouted ‘Look at me, look at me!’. Not to mention the shocking level and quality of noise that was funneled into my ears.
Of course I have many, many happy memories of early childhood, but those that are sharpest in my mind are those of isolation, confusion and excrutiating shyness.
Nursery: I had absolutely no clue of what was going on most of the time.
Early school: desperately wanting to blend in but oh, the agonising, public shame of having to walk out of the class in front of everybody’s stares for my speech therapy, and then everybody’s questions afterwards. One classmate asking me ‘why was I death’?
My desperation to be a normal part of society was all-consuming and gave me a determination (some would say pigheaded stubbornness) to prove to everybody I was just as good as anybody, and better. With the steady improvement in hearing aids and relentless (and I mean, relentless!) determination of my mum to fight against the system and open up my world, I slowly but steadily started catching up with my contemporaries.
By the time I was in to my second year at a private girls’ school (small class sizes and fewer teachers to remember my needs was, fortunately for me, a huge help), I was academically successful, ending up with 10 O’ Levels and 3 A’ Levels, was in many of the sports teams, played badminton for Surrey and had a decent circle of friends. With long hair to cover my ears and a good speaking voice, nobody would ever know I was deaf.
Now I turn to another memory: this time me at the age of 15, in my bed not being able to sleep. Praying: please God, please God don’t let me go blind. Which is weird because I was not, at this point, suffering any loss is sight as far as I knew, it was that my bedroom seemed darker than usual and I couldn’t pick out things in the room I was sure I could before.
Although I didn’t know it at the time, the slow decay inside my eyes had started. My badminton started suffering. I struggled to see at parties. I couldn’t see the same as my friends in the cinema, I became ‘clumsy’.
But it wasn’t until I was 22 that I had any inkling of what was happening. I was having Sunday lunch with my boyfriend’s family one weekend when I complained about my poor night vision. My boyfriend and his father, who were both doctors, fetched an opthalmoscope, spent ages taking turns peering into my eyes and looking up stuff in their medical books, In the end the words Retinitis Pigmentosa came out, and there it was, my bombshell. Delivered to me post roast pork and apple crumble in a sunny living room in leafy Northamptonshire.
The formal diagnosis when it came whilst sitting opposite Professor Bird at Moorfield’s Eye Hospital, was of course utterly devastating for me and my family. The unbearable unfairness of it, the overwhelming fear of my new future was terrible. Consumed with numbing grief, resentment was at the surface of everything. Why me? I had already beaten a profound hearing loss so why this as well when I need sight so much more than other people?
My parents supported me and loved me, but I knew they felt an enormous sense of guilt about passing on such genes. I didn’t have enough in me to deal with their feelings of guilt and sadness. My parents always fixed stuff, it was frightening to see them and everyone else become powerless.
I was offered no effective, appropriate support for someone of my age and stage of RP. The literature, containing pictures and stories of guide dogs and canes and people twice my age, made me feel ten times worse as I was nowhere near that stage and I threw everything away I soon as it came in the post.
Completely lost, this was the beginning of my new mountain to climb.
‘Down the loo or in the nettles’ is to be continued.