February is Retinitis Pigmentosa awareness month. RP for
short is what eye disease I have. But there is nothing short about RP apart
from those two letters. RP is a life sentence not only for the person who has
the disease but for their closest family.
I was four when I was diagnosed and that was after three
years of my Mum trying to tell the Doctors there was something wrong with my
vision but them not believing her. Eventually when they had to admit I had RP,
the dreadful man who delivered the news to my Mum didn’t even have the manners
to lift his head from the papers he was reading at the time. He coldly said. “Your
daughter has Retinitis Pigmentosa and she will go blind. She mustn’t have
children as she will pass on her disease. Take her home give her the best
Christmas as this may be the last one, she will ever see.”” He then went on to
tell her she was lucky because they now know the name of the eye disease. And then
requested she left the room.
In those days there was no internet, no information no one
at the hospitals to give advice. Not even any RP groups. My Mum was asked to
start the first RP group in England but at the time, she was so focused on
trying to find a cure for me.
She never knew anyone who was blind and felt it her duty to
do her best for me this is why we went all over the world to try to find help
but apart from what I ended up having in Russia, for 16 years, thousands of
really painful injections there was nothing, and the treatment in Russia promised
to prevent me from getting worse but I had to keep going every six months. It was
some kind of serum called Inkad and high doses of vitamin A.
My first visit to Russia was pure hell. It was 27 below freezing
and it was the days when no one went to Russia especially for treatment. I was
the first foreign person to receive eye treatment and our Prime Minister Mr
Wilson signed an agreement to say that treatment between two countries would be
free. So at least that was free, but getting there twice a year accommodation
and because the local Doctors refused to see me, I had to visit London six
hours away from where I lived four times per year. This was more financial hell
for my parents as to get to the capital was a lot of money and we had to stay
overnight for about four nights too.
London Doctors were hostile too those who took my tests were
really lovely but the professors etc were just so cold. Everywhere my Mum went
she was faced with negativity for trying her best to help me. But because of
her efforts I managed to see my Son for a year. And then the curtains closed
forever!
I went blind overnight so fast it was eight years after I stopped
going to Russia. It was the speed of things that I just couldn’t deal with. The
shock of suddenly being in darkness and at first that was what it was like. I kept
opening my eyes to see if there was a part of my eyeballs that still had light,
but no, just different shades of purples and dark reds with dirty browns. It was
like looking through sunglasses with really weird lenses of patchy dark
colours. Only I couldn’t take the glasses off.
I would put my fingers up in front of my eyes to just see if
I could even see a shadow, but no, nothing.
I would hold my baby and shake with fear that I couldn’t see
his beautiful face his smile his stunning blue eyes. Photographs of him were
either pieces of paper or sheets of glass with a wooden frame. There was
nothing to see only to touch and a flat sheet of glass or a glossy bit of paper
didn’t show me his cute outfits or silver white curls. His angelic smile or his
future. What would his future be?
How on earth would I manage to look after him? Get him to
school? But one minute at a time, first how to make up his bottles and get him
changed, washed then to interact with him giving him a chance in life to do
things that all other children did.
I can tell you it was pure hell. And where was there any
help? Well there wasn’t. by this point I was without my beloved parents. It was
me and my Son against the world. That was how it felt.
Growing up my child had to put up with so much at school
from kids and teachers. This is what I mean when I say it doesn’t just effect those
with the diagnosis.
Because of my fear of passing on my eye disease, I never had
any more children. I kind of wish I had, but having said that, if I had of
passed this onto my other children, I would have felt so much guilt. As it is,
who knows, my Son may still develop RP and his children may too. The only hope I
have is by the time he has children, there will be at least a treatment out
there to stop the condition getting worse.
When others are deciding on future jobs, those with RP have
to decide around what vision they have now and what they may have in the
future. University is difficult but nothing in comparison to what it was years
ago. Technology has made life so much easier. Not only at school, college,
university and in the workplace, but at home too. The iPhone has been a huge gift
to those who can’t see. Software that makes our lap tops talk too like what I use
Jaws. All this wasn’t available when I went blind twenty years ago.
Our children may not be able to drive, and this will separate
them from their friends. But still, I never had enough sight to drive. It’s OK
though, once they got over the fact that all their friends were driving, and
they couldn’t, I would be there to tell them it’s alright, and there is alternative
transport. Obviously, it’s not as convenient and again, you are different to
your friends.
Now we can have artificial help which is great, though
nothing replaces vision. Just to wake up in the mornings and see the sun, even
the light in your room. To see yourself in the mirror or your loved one’s face.
To be free of RP, will it ever be? I’m sure it will in the future, though not
so sure I will be blessed and freed of this horrific eye disease.
Some say it’s like a cancer you are told you have RP and you
just slowly wait to die. Well I desperately wanted to die when I went blind but
now, I want to live so badly. I am still grieving for my loss, you never stop
grieving really, life is different for sure. Challenging difficult, but we also
can still laugh and have fun. We just have to learn to live in a very different
way that one day will become normal.
I honestly can say that waiting to go blind has to be worse
than when you have lost your vision, but this is only after years of being
blind you may think this.
I go to the cinema with my friends I can’t see the screen. I
still laugh I’m lucky in this country we have audio description so I know what
is going on through earphones when words are not spoken. Same for our TV Hub
and I watch the television and we don’t see but hear. So, the picture has to be
audio rather than visual. And if I stop to think about that, during a movie for
example, I can get very dark and depressed. But I have had to teach myself to
except what there is and get on with it.
People just don’t realise how lucky they are with sight. And
for those who have just been diagnosed with RP, and who still have really good
sight, you too are lucky but I guess you will spend time so much time, worrying
grieving for what you are going to lose? And the thing is, you may never lose
your sight. You may always be able to keep some of it. And believe me, some is
better than none at all, but there are some good points about going totally
blind,
I can now go out at
nights. When I had vision, no way I would as part of RP means you can’t see too
well or at all in the dark, even a darkish room. There are no expectations when you tell people
you are blind. When you say you are but they know you have just read something
in print for example, people get very confused and think you have sight and
sometimes they may think you have much more sight than you actually have. I know
when I had sight, I could read the smallest of print, but only see one letter at
a time. No way I could see a full word. But if people saw me reading, they
would think I was with more sight than I actually have. So, being blind removes
all that confusion for others. I can’t
see the ugliness there is, on some people’s faces. But to my three positives,
there are 33 negatives about being blind. So, Let’s just hope for all our families,
there is hope for the near future for treatment. As for me personally to see
again, is a gift that I will be forever grateful for. even if it’s just to see
a smile.
© Fiona Cummings
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