SO TURN ON THE LIGHT?

I was chatting the other day, just wondering out loud. I’m in groups for those who are affected by RP. My eye disease. I have oftern wondered about those groups and what would happen to them if we were all blessed with sight? Some kind of new treatments, cure or a gift from our maker?

 

Would those groups still carry on? If so, what would we talk about? As the majority of conversations on there are troubles with our eyes, sometimes we have a light laugh about something and then we ask advice. There are people on there who have partners or siblings even children who have this condition rather than themselves.  It’s kind of to let off steam.

 

I remember when I first went blind, I had no one. No groups, no friends not even family. How could I talk to my Mum about it? All her life, she spent trying to find help for my eyesight. All over the world we went! She lived in the bubble of fight for sight. To face facts that her little girl would end up blind was a nay nay in her linguistic ability.

 

How could I tell her or talk to her properly when A, my Mum and I never had that kind of relationship sadly and B, we as a family were with the knowledge that my Dad was very ill little did we know he had weeks to live just after my blindness occurred. Quickly and brutally overnight, I went blind. It was a total shock to my whole system.

 

So if only I knew about groups in those days? Mind you, would I have been ready then to contact people? Not sure as to even try to breathe was a huge effort. I have never been so afraid in my life. Not ever. And my life has been full of fear from first night at boarding school when I was six, to being left in a dreadful hospital with archaic conditions in Moscow in the mid-seventies at the age of six for almost seven weeks without seeing my Mum Dad brother or even anyone who spoke English. From the Russian Mafia to so many other times in my life that I haven’t written about here or even spoken about.

 

I was totally terrified. I hadn’t been around blind people since the age of twelve and really believed that I would never go blind.

 

Now days there is so much help out there and the internet provides a safety net and thank goodness for that, but way BAC for me seventeen years ago, there wasn’t much about, well, not that I knew of. The so called experts of their time were cold individuals. Right then, I needed a shoulder to cry on and the groups now days are great for that.

 

So, brings me back to what I wanted to talk about. If we all have sight in ten years’ time, will the groups survive? If not the groups, what will you talk to your other ex-blind friends about?

 

Now our blind friends we talk about so much, politics, weather, holidays, but a lot of what we discuss ends up asking how we did it? Where did we find it? Was there any help there? Is it accessible? We laugh at each other’s mistakes and feel pride in each other’s achievements. So in ten years?

 

For me? Oh I can dream. I do dream. What will I do in life? Where will I go? What will I do when I get there? I will be in heaven as far as I feel.

 

I hopefully won’t get arrested. As I will just want to look at everything with great detailed recording from eyes to brain to heart. I would eat the air of sight. The pain free life of walking without falling, bumping into anything mind you, I must say, since I have lost my sight, I hardly if at all, fall now but when I was partially sighted, I did have the odd fall. Perhaps a few times a year.

 

Because I see through my feet now. Sounds OD I know, but I feel I do, I concentrate more.

 

I would have constant butterflies in my stomach. Pure excitement. What would be next just to open the front door and know who was there would be a huge delight for me. The stress of not knowing is awful. I used to have an intercom but not now, though I for sure would recommend those for people without sight.

 

My friends, I would meet up with them and we would be free to go wherever. Not where dogs were happily accepted or where we knew the route to or stay in the house because it’s easier.

 

We would see each other more oftern I think.  Because it would be easier to get there and back.

 

For the first time, we would be able to look into each other’s eyes. What would we see? Would we look at our friends in a different way? Rather than look into their soul their words their hearts, would we look at their appearance? Their figures? Hair make up clothes? Would we become more critical? I wonder if we would not hear the voices of true feelings and see the false ways.

 

I hope not. I would hope I would have learned a very difficult lesson of life and that is to see someone for whom they are rather than what they are.

 

I would hope I would never forget how difficult life could be and help others who need it. I hope I would spend the rest of my life dedicating it to the needy. Needy? What a dreadful word that is. But how else to put it? I have been spoken about before as needy. I hated that person and I will never again speak with them. Needy? Really? Is that why they came to my rescue? No. I thought not.

 

My Husband and I need no one. Would like someone but need nothing. We have made this life on our own. If occasionally we may get kind help, we are grateful. But we can survive without it. And survive it is. As lifes challenges are expensive. And challenging to the mind heart and soul.

 

So we could tell stories of what we have done on that day and I expect the first year would be simple things that sighted people take for granted. But second year, would we be too busy in our new lives to come onto the groups we are in? I hope not, I would hope we would never forget our black days and it could become like a kind of religion, I suppose. A gathering of people who are grateful and respectful. I mean, that is what religion should, be all about right? Sadly now days that’s not really the meaning.

 

So do you dream of days of sight? If so, what would be the first thing you would do? For me? I would look at my Son until he told me off I would look at my first and forever love my Husband and see how he has changed. He was twelve when I could see him.

 

My Hub always says. I would see him and run a mile. No. I wouldn’t. He was a good looking little boy and I’m sure is still lovely. But I would remember him saving me from madness and total forever darkness and showing me that the blind can see, just differently to those whose eyes work better than ours.

 

I would remember the love he showed me after so many years apart and I would remember the days when I melted into his arms. The safety of his love and I would remember the times we have struggled. But we got there as a team. He and I will be a team forever I pray. I adore him and want to walk by his side my whole life. And when time comes when we must move on to the next land, if there is such a place, I hope to wait for him or find him if he goes first.

 

I won’t stop loving him because I will see.

 

I won’t ever forget this sometimes hell of a life in the dark.

So please turn on our light?