RP AWARENESS MONTH

February is Retinitis Pigmentosa awareness month.

“You have RP, you are not dying. Get over yourself.”

“It’s not like you have cancer or something like that!”

“You can see print so there’s nothing wrong with your eyes!”

“So it’s night time, why are you saying you can’t see? You were walking around perfectly well earlier today.”

“So you have been told you are going blind, well make the most of the time you have left then.”

“Stop moping about. If I were you, I wouldn’t let RP beat me. I would continue doing what I have always done.”

“Why did you have children if you know your eye condition is hereditary?”

And the best one I have ever had is

“Do you enjoy being blind?”

These are just some of the idiotic things that have been said to us. I have been told I shouldn’t be allowed to leave the house. Why study who will give me a job? Oh the list goes on. So Okay, we have to listen to these words of torture as well as suffer with RP. Yes suffer. Here is why.

 

We are told we have this eye condition. We go to the eye hospital hoping for drops or some kind of operation. A cold calculating person sits in front of us and says the words.

“You have Retinitis Pigmentosa this is a degenerative eye condition which will eventually lead to blindness. No one knows how long you have with sight.”

 

I have been told that there will be no cure or treatment in my lifetime or the lifetime of my now eighteen year old Son.  We have to leave that hospital some like myself who was a four year old child, with my Mother in tears. Totally terrified and distraught. In those days there were no counselling or endless sheets of paper to read about. If a young adult, you don’t want to be reading booklets telling you of your future in the darkness, as that are what blindness means, right? This is what I believed. As young adult late teens, you want to drive like your friends and go to study for the vocation you have dreamed about. Now you have to think about how you will get around without a car, what will you do for a job/career? How will you read and write without sight?

 

You are newly in a relationship. Now you have to tell your partner you have this eye disease will they stay with you? Your friends don’t want to know you anymore. People actually cross over the road to avoid you. People ask the person you are with if you want sugar in your tea. 

 

The list goes on. But the truth of it all is, because we never know when we will lose our sight, even if we will, it is in my opinion worse than a lot of eye conditions. Since I have lost my sight, after many years, I now feel more comfortable than I did when I had sight. Don’t get me wrong, to have the small amount of sight I had way back, now, I would be so relieved and happy but to have to keep, not to lose. I’m not waiting to go blind now. I’m not terrified. Before I was so afraid. The morning I woke up blind was the most cold lonely scary time of my entire life and those who really know me and I mean really, which I guess is about two of you, will know I have had a life of pain grief stress worry and life changing events. But to be blind was the worst. Worse than being in a cellar surrounded by cats a jar of leaches next to me to take my blood and being electrocuted. By being grilled and threatened by the Russian mafia and interrogated by the KGB. Oh and that is the icing on the cake of my life.

 

Blindness really was the worst. No more could I see the time, my babies face, how to walk without anyone with me? How would I ever breathe normally again. My brain still saw, but hadn’t spoken to my eyes and I would see  men appear in my house in front of me. It took me a while before I learned about The Charles Bonnet Syndrome.

 

Because my eyes look quotes normal, people didn’t believe that I couldn’t see and still don’t. People think us blind folk just naturally learn Braille? Well, let me tell you, finding someone who will teach you it in the UK is a huge challenge. When you are an adult, you don’t feel the dots as well as you need to to be able to read Braille. And when you first lose your sight, your heart is broken, you are not in a place to jump up and get educated for the blind world.

 

I live in blindness in a sighted world. I get kicked in the stomach by words and in general life. A knife is placed in my heart and twisted on a daily bases as I’m reminded I am not like you. There are things I can’t do. So many things I can do as well, even better than you, but they don’t outweigh the tasks I can’t achieve. I’m not talking skiing or driving though getting places is pretty horrific. I’m talking choosing a top to wear, buying a skirt, needing to decorate my house, how? What colours and how do I get to the shops to buy what I need? When I get there, who will help me? I mean, our guide dogs can take us places we have been taught the route of, like a mechanical robot, getting there and back. But in the shops, if there is any misconception, our guide dogs don’t take us to the correct isles in the shops and read prices and colours. In fact if we were to go into a new shop, we would not be able to give our dogs instructions how to get from A to B, we drive our dogs they stop us from crashing. They don’t lead us as at the end of the day, they are dogs. They are trained to keep us safe from traffic and stop at steps avoid obstacles and let the public know we are blind. I used a white cane for two years before getting my first guide dog. When I got my Black Beauty, I was approached by so many people at the school gates dropping my Son off and asked. “When did you go blind?”  When I got my dog, suddenly people began to talk with me. Why? Not sure. As soon as they spoke to me they told me they stopped their children playing with my Son because they thought I was an alcoholic. My Lord. That hurt.

 

It’s not just us who are affected, its our family. So why have a child?

 

For me I didn’t want to pass on my dreadful disease down to my offspring. It was a huge decision. I had one child. I took that selfish risk. I believed back then that there would be some treatment by now, and though there is more happening now in the medical world for future blindness with RP, we are still a long way off thanks to politics and funding.

 

From the moment my Son was born. I bit my bottom lip prayed every single day night for my Son not to have RP. I have learned that he is a carrier so his children could have this disease but so far thank God he hasn’t. I say so far as this disease may not show its ugly head until the person is in their fifties or older. It was just my bad luck I had it from birth.

 

So families, my son now when he meets with the person he wants to have a baby or a long term relationship with, he will have to tell them the situation. Wil they stay, or run?  

 

When you first lose your sight if you have not prepared for it and I hadn’t as I truly believed I had years as I was reading tiny print the day before I lost my sight. I didn’t know how to pour boiling water from the kettle to my cup. I had baby’s bottles to sort out to measure how? Nappies to change food to cook prepare, how? Yes now I do it all with ease but back then? No. Still today I spilled some boiling water over my fingers, it just happens. If my Son sees this, he inhales and panics. Telling me to run my fingers under the tap. I’m like, really, Son, this is life. I don’t even feel the pain anymore. I do when I walk into half opened doors. That really hurts still in fact the front of my brow on the right side has permanent pain because of all the times I have done that or bent down and misjudged a work top or table. Or a Getting birthday cards we can’t read or know what is on the picture. Who are they from?  Not getting cards as my Husband was told when he was at boarding school the reason he didn’t get a birthday card is because he wouldn’t be able to read it anyway. This affects your life.

 

This disease can lead to serious depression. I know of some people who have taken their own lives as the fear that darkness will prevail pains them so much. And to have no one around you who understand your pain your moods your agonising decisions, people around you who mock you who think it is funny to joke about your situation and believe it’s OK to visit once a year or less and not ask if you need anything you have small children, I know of people who have families who never ask if they need a hand getting Christmas gifts and so on.

 

I could give you a huge list of achievements and just in general things I can do and have done, but I could give you volumes of things I can’t do.

 

It’s not just the waiting game. It’s not facing blindness. I mean, what is blindness? Another time for that. It’s the rejection. The hurtful words and lacking in compassion. Tactlessness. Humiliation. And the list goes on.

 

This is RP awareness month. There is so much on the net about this condition I don’t need to go into detail about how we can and can’t see I do need to make you aware we are like you, well, no, I will rephrase that, we are born like you but because of our disability, we become more caring and understanding perhaps. But we are humans. We have a brain and feelings. We are people. Not objects.

 

I hope one day my blogs will be about how much now I can see, how free I feel. How I have no weight on my mind and in my heart. How the sunset looks so pretty and the ocean is so inviting by its colour and how I delight in seeing my Grandchildren in the futures faces my Children when they marry and how I can be there for those who may not be able to see with other eye conditions. But that day is up to medical advances and funding.

 

With love.

Fiona Cummings ©