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Monday, 30 April 2018

RP FILES A MOTHERS LOVE BY FIONA CUMMINGS


A group I’m in had a Mother who posted a comment and she was attacked in a gentle way but words which could have hurt her and for what? Helping her daughter? All I can say is it brought back lots of memories. Her 11-year-old daughter was diagnosed with RP only a month ago. Already the little girl is receiving Micro acupuncture and electrolysis. As far as I’m aware there is no known scientific proof that works. Though I have had electric current treatment myself many years ago. It was part of the treatment I received in Russia. Did it work? I don’t know. As I had injections too. Did they work? Again, not sure apart from I can tell you when I first went to Russia, it was when I was six, I could see one line on the chart and when I stopped going, I could see seven lines with the eye that saw nothing years earlier, and eight lines with my good eye, the eye that saw one line.

 

My parents knew there was something wrong with my eyes when I was a year old. It took the Doctors four years to admit there was something wrong. My Mum was coldly told to take me home give me the best Christmas as I probably would be blind the following year. This was many years ago remember. He said there was no treatment and I wasn’t to have children. I remember that day well. I was four.

 

I’m writing this as brief as possible. My Mum was terrified of blindness and I guess passed that fear onto me. She took me all over the world. We came across sharks. But ended up in Moscow. Ten thousand people travelled to the former USSR for the treatment. You had to go every six months. Some people with good sight went every ten months. My vision was really poor as a very young child though the Russian Doctors said their treatment wasn’t a cure, within a year my vision improved.

 

My Dad worked seventeen hours per day and my Mum was driven to save my sight. My parents had no life they had no spare money to have a life. the guilt I will feel forever.

 

In hindsight, I really wished they had not took me abroad, but, if I hadn’t have gone, I wouldn’t have seen my babies face. But if I was brought up with the fact if I went blind, it wouldn’t be the end of the world, then when I did go blind when my baby was a year old, I wouldn’t have been in the state I found myself in. terrified, to the point I couldn’t breathe. How was I going to cope? I couldn’t live. I didn’t want to live in such a dark depressing world.  I had no support or help as my parents died very close to me losing my vision and again, I wonder if me going blind didn’t help that factor.

 

I will never know. If me going blind stopped my parents from having a focus on life. as they had for thirty years fought with my vision. They didn’t know anyone who was blind then and to them, they were many years older than me, thought blind people sat at home and couldn’t work.

 

If I hadn’t had had the treatment, I would have been allowed to learn Braille. Russia believed if I was to learn blind things, I would think blind and be blind. Letters come now, I can’t see the print obviously, I still don’t know Braille. So, I guess you could say I’m illiterate.

 

It would be great to know Braille then I would be able to identify tablets. As it’s law for pills/medicine to be in Braille.  I could read letters as again in England, it’s law that we should receive our letters in a format that is accessible to us… Hmm. That kind of leaves me out. Thank goodness my Husband who has been blind since birth, can read perfect Braille.

 

I took an exam at school to define which high school I was to go to. I passed and was to go to a school for children who were partially sighted and it was I guess a Gramma school certainly a great school as far as education. The interview went so well with the head master but when he learned that I went to Russia twice a year he said no way I could go to that school because they expected A students and I wouldn’t be able to achieve A’s if I wasn’t hardly there. So, my education took a tumble as I went to another school where education was limited in comparison to what I could have had.

 

The treatment was painful and I dreaded going. I wanted to see as a child for my Mum and Dad. I now want to see for me. I wish I had a good education. Since school days I have since gone to college and took many exams but I was already in my thirties then and every time I go for an interview, they say no because of my lack in experience. Well I can’t get experience if no one will take me on.

 

 It would have been a dream if only I was allowed to be blind and continue my education as what was expected from the ability I have inside of my mind, then I would have followed my dream and been a teacher. Now it’s my dream to see. I live to see. But I have learned that blindness isn’t the end of the world, though it can be so very depressing and lonely. But then my love and I have each other and we laugh so hard, something I never knew was possible when I first went blind.

 

What would I say to that Mum? If I was her, I would read a lot see what is about, know there is hope for the future for us, and allow her child to be herself by teaching her everything to do with blindness. Especially Braille, before she is 13 and won’t want to learn anything like that. So, if she does go blind, the little girl is prepared. At the same time, I understand why she is doing what she is trying to do for her daughter. And my Mum couldn’t understand how parents at school just let their children go blind, none of them seemed to be bothered. No one else tried to look for treatment etc. to me that was harsh too. I think if I hadn’t had the experience I had, I too would do what this lady is doing and try everything for my child. Knowing what I do now, not sure. The most important thing is for her child not to be afraid. So, she may not be able to drive. It’s not the end of her world though she will feel it is but she will get over that especially if she has the knowledge of independence to be able to get places with a white cane or guide dog if she needs one. I have a lovely dear friend who is in her eighties who is just starting to lose her vision now. this little girl could be fine until she is so much older, then I pray there’s a cure. In the meanwhile, teach your child blindness isn’t death. But anyone who tries their best to find treatment, is a good parent. Just as anyone who helps their child to learn to survive in the blind world without fear. As I have written about before, my Husband went to University, has three degrees and a Masters in business. He has never been out of work. He is now an area manager and before he started to work for this company, he worked internationally and was head of.

 

It’s so difficult for blind people to get employment especially if they don’t have degrees coming out of their ears.  We need to educate employers and tell them blind people are great workers and to at least give us a chance. And to parents out there who have children who have just been diagnosed. Please don’t put your child in a place where I have been. I don’t want any child to fear blindness as I did. Or think of it in such a negative way as I did. I have friends who are teachers who are blind and even solicitors. One even has just become a judge.  I also have friends who work in an office and to get to work they use the train and walk to their office. They are totally blind. They can do it as will your child if you allow that to happen.

 

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