Today is 19 years since my life changed for the third time
in six months. If not for my baby I wouldn’t have lived through the hell of
losing my vision. My whole life was based around being able to see. It was
gifted to me that I would see. But it was a gift that wouldn’t last. When it happened,
it was far too fast and crushed me at a time when I really needed to see. Not
only for me and the months ahead, but for my baby. I was alone with him. It was
me and him against the world. A world in which I really didn’t understand. And within
weeks of losing my sight, my darling Dad died. He was the most loving man. He
was funny and gave his life for me. And then a few months later, the death of
my Mum. I couldn’t cope with it at all. I screamed when I heard the news she
had died. Why, how? She had a cold. That’s all, a cold. Dam cigarettes. Dam hospital
she got sent to. She was in there just a few days, she would come out, right? I
mean, hospitals are meant to help people.
I went mad, crazy in the head. I wasn’t only grieving, but I
had the darkest depression from years before. I was terrified not being able to
see. I kept opening my eyes wider to see if it would make any difference. But sadly
no. there just didn’t seem to be any help or if there was, I didn’t know who to
ask or how to ask.
Now days there is the internet. iPhone. Communication is so
much easier, but of course, if you suddenly lose your sight, how will you communicate?
How will you type the letters on your screen and see what others are writing to
you? This is why I say in almost every blog like this, please learn to touch
type and be aware what is out there. Don’t be like me and think it will never
happen or if it does, it won’t be for years or, it will give me some warning
because of two reasons, one, for me it happened overnight. I have documented
many times how I was reading tiny print on the Sunday night and Monday morning I
was with dark purple shutters in front of my eyes. I couldn’t even see shadows.
I couldn’t breathe. I was scared stiff. I wanted to end the pain but couldn’t
because of my baby. I wasn’t going to leave him like my so-called natural
mother did me.
Thank God for my adopted parents. But God took them right
after he took my sight.
For some people, after all of that, they would struggle
believing in God. For me, I kind of walk by his side daily and always have done
though do not understand him at all. Why would he do this to me?
Making my babies bottles was impossible. As I had to fill
them to a certain number. I didn’t know about tactile jugs then. Changing his nappies,
oh, my, especially as he was one and wriggled. Also like any child of his age,
was so curious.
I just wanted to cry all day. But I couldn’t it was so
important for me to not let my child see me in such a way.
Because of my life then I had no friends no one I could
trust or turn to. And I believe even though now days it’s easier by a country
mile to face blindness, there are still some people who actually don’t know
what’s out there. Possibly all because they don’t have anything to do with the
internet or want to go to groups where they will get support.as that would mean
they would have to fact fact that one day they too could be blind. And not
everyone wants to hear that.
At a time when I just needed help, needed a mother’s love,
needed grand parents for my child, it was torn from me. And today I suffer
because of my past there are so many other things that has happened in my life
that has made me the way I am. Nothing I can do will ever change that. I have
to just try to look forward and not backwards, but when you are being shadowed all
of the time, it’s very difficult.
Wherever my Mum is today, I hope she is happy, if there is,
such a place as heaven, personally I believe we do move on but not sure where. I
just hope it’s not as cruel as earth.
So, when people talk of treatment or a cure for blindness or
at least to prevent those going blind, remember that it’s not just the person
with the sight problem that it effects. But the closest family. Like our
children.
My Son did suffer as a child because of my vision, or lack
of it, and though I worked until I was exhausted, it was impossible to protect
him from everything regarding my sight. Even now the guilt I feel when I can’t
give him a lift somewhere or pick him up or make his life easier. But what I can
do is small things, like make sure he has a meal when he comes in from work. But
in honesty, that is all he gets from us because he is so independent. I guess
having blind parents has given him two choices, hide or get out there and
thankfully he took the latter. My Husband has worked hard to bring him up to be
the fine young man he is today. I guess I over love him and I know this isn’t
good especially for me, but I just don’t know how else to deal with life. my
Husband and Son are my existence. I hope one day to be able to be free of my past. And I wish I could stop hurting for the loss
of my parents. I wonder do you ever get over it?
It really doesn’t get easier, just you learn to cope with
it. Like sorting out a messy room. Tidy it up and walk around easier. But you
have put everything in the cupboards so that mess is still in your house.
The good news is, the retina is a good target for gene therapy,
as it is easily accessible and compartmentalized from
the rest of the body which helps to reduce some side effects.
So, gene therapy and replacing cells is being researched as
well as electrons. It’s more than we had fifteen years ago. It’s just taken so
very long. Physicians can easily see into the eye, they can’t see so clearly if
something is working on the spine for example or someone’s brain cells.
So, I think we have good news in the future, but how many
years we will have to wait, your guess is as good as mine. I know that there is
that so-called race and so many countries are running to get to the line before
the other scientists/researchers catch up.
Who will win? Well, we will and I hope that final ribbon is
broken and we can run through it soon.
If you are thinking about going for a trial, please make
sure it’s legitimate as there are many sharks out there. So many people
claiming that there are cures too. If your trial is real, then they won’t
charge you for researching with you.
Japan is flying the flag right now and the UK are doing a
lot of work. So, let’s see, which country will be able to be those life
changers. As I always say, I wish all countries would get together and work as
one. Then things would happen so much faster.
Later with love and hope
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