We are not just waiting for our days to get darker, for our
loved ones faces to disappear or for us not to be able to walk free from chains
metaphorically speaking of course, I mean an arm to hold or a piece of plastic
like object they call the white cane. If we are fortunate we will have a guide
dog to do just that guide us, not to tell us what clothes are in fashion, what
make up looks good, or hair style is trending.
Our dogs stop us from walking into objects but we have to
learn to trust them and sometimes we trust them and they make a mistake. We are
lucky to have our guide dogs to stop at the road and if we think it’s clear to
cross, hopefully, usually, our dogs if they can see traffic coming, and we can’t
hear it as it may be a very windy day which affects our ability to hear the
cars. Our dogs could save our life.
Our dogs don’t tell us what clothes size we need to find in
the shops or what fruit looks good to eat. We can’t do that anymore by sight.
We lay awake at nights wondering if we will be able to see in the morning as we
wake. One day, we may wake up and the darkness will have prevailed.
How do I get to the bathroom? Which toothbrush is mine? What
is shampoo and which one is shower gel? What clothes do I put on?
And, what matches
what? How do I start to cook breakfast?
What will I tell the kids? Oh, the children? How will I get them to
school? Who will pick them up? How will I help them with their homework? I will
never see their smile again or their funny little pictures they drawer at
school, as for their school photographs? A blank bit of card.
Letters come through my door, what do they say? It’s my birthday
people don’t bother to buy me a card, why, I can’t see it! How will I get to my
child’s Christmas play at school? The hall will be so full I won’t know where
to sit. Even if I got there, my child is on stage but I can’t see them so my
child looks at me and I’m looking elsewhere. How does that make them feel? How
do my kids feel when their peers are making fun of me in front of my children?
It’s the kid’s sports
day at school. That won’t be easy; you have to walk around a huge field to see
different sporting events. People avoid me until they get to know me and how do
they do that if they avoid me?
My child has a birthday party one of their friends. It’s a few
miles away. Getting There? I hear at the school gates parents mothers discussing
car sharing, well, I don’t have a car to share so I will never be of use to
them. How will I get there?
Personally, I was lucky in a way, I was married when my
child came along but some are not. Those who aren’t how do they tell their
future partners that one day they may be blind and not only that, our disease means
there is a chance that our children could be born with this destabilizing eye
disease too.
Its Russian roulette we could have four children and three
could have perfect sight and the forth?
We could be a young teenager when we get the news. So, now
to take exams? Will I be able to see print when the time comes? What career
will I choose? My dream job won’t be happening now. University? How will I cope
if I start and half way through I go blind? How will I get around the huge campus?
Will I make friends?
I’m elderly my family are either older than me I don’t have
children I live alone. I have just been told I have Retinitis pigmentosa and I
could be blind within a couple of years. I can’t touch type I know nothing of
computers how will I get my shopping in?
Cooking? Will I ever be able to cook my favourite meal again? How will I
get to the Doctors? Who will pick up my prescription?
I’m in my late thirties and I have a wife and three children.
Youngest being two. My wife is a full time Mum I’m the bread winner of the
house so earn the money. I was given the news I had RP last week. After I
stopped shivering in fear I freaked out wondering where we will get money from
to survive. I’m a truck driver, have been since twenty one, it’s all I know
really, before then, I worked in an out of town café. What skills do I have where you don’t need
sight? Who will employ me if there are ten people applying for one job, no way will
they take the Mr. Ordinary who is blind. You have to be extra ordinary to get
anywhere and I’m not. How am I going to tell my wife of this news?
I’m a business man. I own my own company. I need to drive to
get places. I need to see whilst in meetings to meet and greet and to see white
board’s charts etc. How will I manage those
huge conferences? Golf? I love my game of golf. I have played it since I was a
child. Now how? Tennis with my pals, no more. What do I do to entertain myself?
How do I know when my white shirts are no longer white? Who
will keep my garden tidy? Will I lose my house if I can’t get a job? Who will
pay the mortgage?
I’m a seven year old child. My Mum is blind with RP and I
have just been told I have that too. My eyes are getting worse now and I can’t
see at all in the dark. At school our corridors are really dark and I have
fallen down the stairs. As I lay there in shock, my knees bleeding, my friends
started to laugh at me. Pointing. Singing silly words about me not being able
to see. Blindie, Sightless stupid they call me everything. They laugh about my
Mum too how she was standing at the wrong door to the school as she didn’t see
the notice telling her that door was closed today. The teachers tell me off as
I forgot the biscuits again. It was my turn. On the chart my name was on I should
have brought them and I didn’t know. The teacher tells me my Mum should read
it. She knows that my Mum can’t see, but she keeps making comments like that.
My Mum cries I hear
her when I go to bed. No one wants to
play with me at school as I can’t see well enough to join in I’m not fast
enough.
One of my friends stopped being friends with me as she told
me her Mum didn’t want her to be my friend.
These are just some of the thoughts those with RP have.
These were my thoughts too and my experiences. I have gone over the golden
bridge and left the riches behind. I’m now sitting on a park bench and telling
you how I feel now.
When I first went blind you know from my earlier blogs I was
ready to end my life. I saw from my eyes dirty brown colours which turned into
purple. Then black then grey and now nothing most days as if looking out from
my elbow. Some days I see what I think is sunshine. But then I close my eyes
and the sun is still there. Sometimes I may see shadows. But if I do, I look as
I’m seeing something, this is great right? But then I suffer as my eyes burn
like pure acid is being poured in them. Some days my eyes feel like they have
been kicked with pointed boots and other days as if a razor is being used to
cut my eye lashes. Then other days I just feel as if they are heavy.
I can cook I can do my washing of clothes and iron; I clean
my own house and manage to pick clothes that match. I have learned to purchase
what I need to help me around the house and there is software on IPhone now too
as for the IPhone, well, they talk. As for my computer, that too talks, but we
have to pay about £700 for that pleasure. That is on top of our computers. We
also pay for software for our scanners so we can read letters. But not the full
letter as most of it reads back mumbo jumbo. As for hand writing no, we can’t
read that though there is a service you can call and using the camera on your
phone, ask a real life person what the letter says? But do we want this
intrusion into our personal life just because we can’t see? Answer, no, but if
we want to know what it says when it comes to hand writing or even something
out of the freezer, we must call up an
application on our IPhone, wait
until someone answers let them look at what we need to see the whole process
takes about two minutes on average. The service is called Be my eyes. If you
can see, you for example, open your freezer door; see what you want and Bingo.
About ten seconds max.
Your letters? You even know before you open the envelope most
times what the letter is, but to read a letter could take you a minute, for us,
by the time it goes on the scanning machine we get on our computer and tab
along till we find what we need to then read it if we have the paper the right
way, it takes about three minutes.
Now I don’t want this to come across as a negative blog and
make out as though blind people are hopeless. Quite the opposite. My Husband
went to University he has three degrees and a Master of business as well as his
A Levels where he received the highest grades, My schooling was appalling but I
studied at college for six years and received A’s for everything but maths and
for that received a C, but if you can’t read Braille or print, maths is a
nightmare as at times I had to remember up to twenty numbers before starting
the calculation so a C I was amazed I even got that.
The entire tech you can get now wasn’t even available ten
years ago. Some of it, even five years ago. So that is great, but the
loneliness of being with sight loss, excruciating. Doctors are getting better
but to get there, wow, they have been so nasty in the past.
A cure? That would be amazing not sure in my life time there
will be a cure, but there are treatments on the horizon. If you are gutted to
the stomach to hear what I said about no cure in my life time? I’m sorry; I
hope I’m so wrong. But as for treatment? There is a lot being done around the
world but we could wait twenty years or two, if twenty that is a very long
time, if two though, that is great and I hope it is two years then I can write
my blogs without listening to this robotic voice and I laugh, sighted people
hear me typing and say things like. “Oh, I couldn’t stand listening to that
voice on your computer. It would do my head in.” I wish I had a pound for every
time someone said that and £5 for every time I have told them we have no
choice. Perhaps they should stop and think before they make a comment like
that, as if we enjoy this voice reading out every word in some cases letter in
a manner that is so mechanical?
There are a lot of frustrations in our life. I want a
picture hung on the wall. It takes weeks before someone will do it we want our
garden tidied, no one will come out unless you pay thousands. Three and a half
thousand was one of the quotes I got last year. My garden is tiny. No grass at
the back either. There is damage done to some paint work but we have to wait
until someone will paint that for us, so where is if we could see, we would go
into our garage get some paint and do it, rather than wait for our trusty
painter to be free then come. It would cost us nothing as we always have a bit
of paint left over in the garage. But we have to pay at least £40 for a tiny
bit of touching up. So everything costs more. But, we do get it done, it’s not
impossible. When we first lose our sight, we believe that nothing is possible.
We learn to adapt. Now I receive so many emails from those desperate to find a
cure for Retinitis Pigmentosa. Just like I used to be. This is what I mean,
once we have lost our sight, after the initial time, we learn to live in a
different world. For some they are all prepared. Great, I wasn’t. For others it
takes a year and for me, it took ten years and I only adapted because I was so
lucky I was sent my Husband who has taught me everything I know. I have mixed
with friends who also can’t see and I have learned that we can laugh, we can
have fun.
How many people have been shocked that I have a house? A
mortgage? Blind people, own houses? Well we can, if we work. Just like you, oddly
enough.
We can go on holiday, not quite like you, we either have to
go somewhere we know, or a place that will be suitable for us to stay in the
hotel. I remember one place my Husband and I love to go to, we had been there
for two days and were entering our last day. People were coming in; guests,
saying what a lovely day they had and the beaches are amazing. I felt so sad. I
really wished we could have ventured out. But how, if we have not been taught a
route? When in a city, you can get a taxi from A to B, but we were in London
not long ago and the driver dropped us off and told us the building we needed
to be was just down there. Well, that is helpful. Down where? Where was he
pointing? We got out and walked. We found the building. It was huge. There was
no one on the door. We just had to listen. We followed the queue. Was it a
queue for the theatre or café? When we got to the end. A lady told us that we
were in the cinema the theatre was just across the road. We found it, again,
found a queue by listening and hoping. Got to the end. Were told that the
production we wanted to see the tickets we had well, it had been cancelled. She
told us in a cheerful voice. “Don’t worry; there is another theatre about twelve
minutes away. Oh great, in the middle of London?
Life is possible, but also can be stressful. If we had
treatment, gosh, I really can’t tell you what it would mean to me. TO my
family. I would feel like I have been born again.
© Fiona Cummings
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