RP TRUE STORY

Good day Bloggets.

After a long weekend in the UK, a lovely break, back to work today. I have loved my weekend with my Husband. We never get bored with each other. Bored with life and other people at times, but not one another.

Today our Son is back. What time not sure, but he phoned a couple of times yesterday and a pleasant conversation told me he enjoyed his music festival though not the bands/groups he would normally watch. I think he did all the cooking and putting up and taking down the tent and the person he was with, drove them there and back.

He met up with his friends too so that was good for him.

It’s really odd this year away in comparison to last year. Oh when he went last year, I was truly ill. He was 16 and in my opinion, far too young to be sleeping in a tent among drunks, druggy’s and not all good people. It’s not like I could pick him up in the car if it all went wrong. This is the guilt I have I can never take him places like other parents, but as Hub said, he is the most confident teen we know because of this, nothing bothers him, trains, busses or flights/airports. He can walk into a new job or new class without any fears. We worked hard to get him this way, and it is so much better for him, but I am sure he will hold that against us in the future, because we couldn’t ever take him places. Though in fairness, that is one, and only one thing he hasn’t thrown at us.

 

Last year, I didn’t sleep the whole time he was away. It was the worst rain I have ever known whilst he was away too with thunder and lightning and it was on the news that a few people young lads had been found dead there.

Thank someone; he was OK this year and last. He is older this year and so much taller and he kept in contact every day. What a difference that made.

I still did the silly thing of going into his bedroom on a morning and just standing for a couple of seconds, so I did miss him, but wasn’t devastated like in the past. I am sure this is a good sign as I know I love him too much and it’s so unhealthy for me. My heart for sure has really suffered in the past 20 months.

 

I think he has a week before he is back at college. So more money to find for his bus pass. I did hope he would have a car by now, but because of a very greedy person, sadly that has had to be put on hold. Also to be honest, I think my boy has to learn to be a bit more careful before I could relax with him being behind a wheel, as he has had about four crashes on his push bike the past few months and I did go through a stage when I was sure he had my eye condition as it was daylight when these accidents occurred.

But what to do, he won’t go and see about his sight, and I guess who can blame him? I really wouldn’t either; he is doing what I did for most of his life, burying head in sand.

If he passes this curse onto his children, well, let’s hope there is a cure in the future. I said to a friend on line today RP stands for real pain and it does.

It’s the cancer of the blind world.

You are told you have Retinitis Pigmentosa and though you can see now, you will end up blind one day. You never really know when it’s going to happen. When it’s going to kill you. And for me it almost killed me. A huge part of me died.

To wake up hearing your baby shouting for you in the dark and there not being any lights or anyone to help you or hear your screams, is unbearable.

I was reading small print the   night before I went to bed and woke up blind.

No light switches worked. Curtains were open but the skies told me it was the end of the world.

My helpless hand held in front of me wasn’t even a shadow.

The walk to my baby’s room was a route I had never done before. I had never felt this cold pain in my life though a very tough life I had experienced for such a young person.

I found the black handle to my Sons room. The black door opened not to allow any light, and my little boys giggles ripped out my heart.

His smile I would never see again.

His love in his eyes.

His tiny hands reaching up to me I would never know about.

How would I dress him?

Feed him?

Measure his bottles of milk?

Bath him?

Change him?

I mean know what colours I was putting on him. I was the kind of Mum who was obsessed by matching colours. Socks little hats and clothes all had to be the same colours or at least two colours that went so well together.

But this was the least of my problems, but that was that days problems, not to mention the fact I didn’t know the time. I had lived in a sighted world though had little sight, never had any equipment for blind people never wanted to admit I would be one day in the darkness and my destiny would be so different to any kind of life I knew it to be.

Yes I went to a school for the blind until I was 12, but then went onto a school for partially sighted and being blind or short of sight was never a topic and with my Mum living her life to fight for my sight, blindness was not on the map for me. To be honest, I can see positive thinking, but looking back what a big mistake it was. I advice people now with RP, to learn Braille, close their eyes and do tasks.

But I also say to them that there is a chance now days that there may be help in their life time. For me as a child, there was nothing apart from the treatment I was given in Russia for 16 years

And as soon as I stopped going, my eyesight deteriorated, but I still could see and I can honestly say I never thought I would be blind, though subconsciously, I did wait for the inevitable, as I was told or my Mum was when I was about four, that I could go to bed sighted and wake up blind. And my God, I did just do that. Though since then, medics told me that would never happen as its gradual. Yeah, right.

So the cancer is growing and one day will happen. For me I was too afraid to live. I wanted to die not because I wanted to face death, but I didn’t know how to live. I couldn’t breathe. I contacted all the right organisations, but received cold painful uncaring words from them. No help and sadly the life my parents lived for me, ended theirs as they died within six months after my dark day began.

 

Each day I woke normal. Within half a second I was kicked in the stomach. Grabbed by two fork like hands at each side of my head and rake like fingers dug into my skull.  I was lifted from the bed and thrown back down. Left there alone to wonder how I was going to see to my child that day in such a state. But never did I let him see my tears. Never did anyone see me cry. Apart from my ex, who equally was devastated for me, though sadly didn’t understand the pain I felt or understood how I was going to manage either without any support even from him.

No one will ever know the life I had after my blindness, but I can say, though now days I am sick of RP, real pain, I am fed up with waking up each day to the same view, but I do, and I have done things in my life I never thought were possible. Life is tough, on our own, but now I’m not on my own, and that is the difference.

I have my Husband who is amazing, leaves me feeling quite inadequate at times, not because of any fault of his but because I should have done more when I was younger to live in this world, my destiny.

But is it my destiny?

Will I ever see? I can tell you I still look at the latest news on cures/treatments for my eye disease, but I’m not obsessed now, though please let me see again? But I’m no longer dying, it took ten years until I met my now Husband to learn how to live as a blind person in the sighted world, and it’s hard, painful, cruel but I can do it. I have no choice. I didn’t kill myself some years ago when my baby was one, because of him. How could I leave my boy my only blood like the oven that gave birth to me did? No way, I worship my Son and I still do. Each time he is horrible to me, it breaks my heart, as how I felt when I did loss my sight was so strong for him and I believe I had to live for him, so how can he talk to me in such a way now? Think of me the way he does? I hope it is a nasty stage and he will get over himself? The girl he wants to marry, will never like me why? Not really sure, but that is her loss, as I am a good Mum no matter what she thinks or my Son. I gave him my life and lived for him. I wanted him to have everything I never had and gave him everything I did have. He went horse riding, ice skating, learned to play tennis,  joined a football team, went swimming lessons, learned Karate, joined  beavers, cubs and scouts as well as Hub and I showing him lovely places in the world, like wonderful America, Norway, Japan and the Caribbean. We paid for him to go to Germany when he was thirteen with his school and gave him a huge amount of money when he was 16 that I had saved from he was a baby. That was a mistake, but we didn’t know that at the time. I love my boy, no one who criticises me will ever know how much and why, even these words don’t say, but when others tell me what I should do when he is hurting me, only I can walk in my own shoes.

I guess I dream of a life in the future when my Son and Daughter in law will come for Sunday dinner or we all go out for a picnic, or I visit them in their house, baby sit their child and have wonderful happy Christmases together. That at the moment isn’t going to happen and I am aching and I am being punished for what though? I really don’t know. And you know what? I now am passed the heart break, and whoever is working to break me, almost won, but I have fought with bigger bears than you and come out the winner, and I shall win again to tell another story.

For those who live in fear of blindness, for those who like me have always been afraid of the darkness, I am hear to hold your hand, don’t feel alone and know you can do it, you can reach out and find your way in life. And let’s hope one day we can all turn on the light together, but in the meanwhile, learn you can, have belly laughs again, I promise. They don’t happen oftern, but let’s face it, how many sighted people do you know who are truly happy? I can honestly say, I don’t know any? But I can also tell you that when my blind friends and I get together, we are real, we laugh we love and we are us.

Yes, RP can stand for real pain, but it’s not RP for repeated prescription, as we don’t always need pills in our lives to make us walk, talk, laugh, hear wonderful music, learn be educated and leave the prison we wake up to each day. We are RP, restricted people, but we are also RP real people.