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Thursday, 28 January 2016

MY DIARY OF RETINITIS PIGMENTOSA AND ME


I try not to make my blog page a blind blog. Some sighted Bloggets will smile and I guess think rubbish? But really this is why I write other articles apart from my diary. But I have been asked this past couple of weeks to write about so many different RP related subjects. I give in and here goes.

 

 RP is the hell of an eye condition that I have, the long name for it is Retinitis pigmentosa. I don’t need to go into detail about the disease as type into Google and you will learn as much as you want.

 

So first I’m going to take every email I received and amalgamate all subjects into one blog. Bear with? First a synopsis!

 

I was born to my oven they call my natural Mother. The so called natural Father was according to the oven a monster. Well, perhaps he was but she is no angel for sure. So in the womb I was very much so unwanted and for all of those parents to be, out there, and for those who are newly pregnant, please think of your baby? It’s not a thing it’s a human with a heart brain and I do believe with all of my heart, that unborn baby feels for sure emotions and picks up on everything holds it, stores it if you like, its whole life.

 

Rejection is part of me. Feeling unwanted useless hopeless whatever you call it. The knowledge that I should not have been born hurts my soul every breath I take.

 

But there were two parents out there who couldn’t have children. They wanted so badly a second baby. The first born was my brother who also isn’t blood related and who also was adopted. My parents wanted a baby, but not sure they wanted the trouble I caused in their lives.

 

When I was a year old my Mum began to realise that I was dropping my toys and couldn’t find them to pick them up. Long story short, she took me to the GP, he referred me to the hospital, and they said there was nothing wrong with my sight. My Mum told other medics and again same answer, nothing wrong with me.

 

Skip some years I’m now four and my Mum had a knock to the door of her house. I was there and remember the day so very well because my Mum shouted a lot and there were a lot of tears. I can see her face crumbling in front of me now. I hated seeing my Mum like this and as a young child, I was helpless.

 

A man had come to our house with a load of papers for her to sign to have me sent to a school for children with learning difficulties. That is the conclusion that the medics came up with…. Despite my Mum telling them of all my achievements so young in life. My Mum was told to sign the paper and my schooling would begin.

 

She refused and I was then sent to so many psychologists. They all came up with the same answer and that wasn’t what the medics wanted. I was way above average for my age and there was nothing wrong with me as far as my intelligence. So then they had to look further into why I wasn’t reacting in a so called normal manner.

 

Not long before my fifth birthday I was in our local eye hospital when my Mum received the news that her daughter had RP and would be blind by thirteen for sure and to give me a great Christmas as it may be my last with sight. Such a malevolent man. He didn’t once look up from his papers as he delivered the news.

 

This began the journey to fight for sight. My Mum took me to a couple of countries one day I hope to write my autobiography and tell more of where when and how, but the long and short of it meant my final destination was the former Soviet Union. And I could fill a book with those visits alone. It was there when my hell of a life began but in time, Moscow made itself my second home, especially as I spent more time there than at my own home because I was sent to boarding school for the blind. I left that school and went onto another this time was for partially sighted kids. Again, another chapter. I visited Russia until I was 22 for the horrific treatment which definitely worked as it did for the ten thousand people who also followed my footsteps. I was the first foreign person to visit the country and for this reason a lot of media attention was given. I spent my childhood and even part of my adult life in the fish bowl of the worlds press. It was another life. My very simple life now is as though another person was way back when.

 

I mingled with famous people went live on chat shows and news countdowns and the bright lights of TV studios didn’t faze me at all, an yet now I have days when I find it so difficult to leave the house. This is what I mean when I say that person then wasn’t me now?

 

You know the rest, I could see after a few years of not going to Russia, as I decided I had enough of the torture and travel also the debt we would end up with. I’m sure this devastated my Mum as her life was ruined with always trying to beg the bank for more money more loans more debt. For me to give in as soon as I could?

 

With my one year old baby from sight to fright overnight I was blind. Same time losing both of my parents. It was more hell into my life.

 

A divorce and second marriage to my now and forever Husband, I’m here, just, some days and other days I can shake the world. So here I am on my journey still as we don’t know what is around the corner. I know in heaven two angels who still will be looking for that cure for me and I hope one day soon I can look up to the sky and say “Mum, dad, I can see now.”

 

To be continued.

© Fiona Cummings

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