From my earlier blog where I wrote about how it was so
important that I had vision in my life, as it was my Mums life’s work, I shall
now tell you of how I got from that torture of blindness to now. if you didn’t
read my earlier blog, it’s here.
So, if you didn’t read that to stay sighted was so very
important to my Mum considering I was adopted, she did more for me than most
blood parents would have done for their children. I’m not saying it was the
right thing, but because of her fight for sight, I saw for many years longer
than I should have done.
My parents had a very difficult life my Dad worked down the
coal pit for 17 hours seven days a week. It wasn’t easy for him either. He
crawled along the ground with only four feet between the ground and the roof.
So, terrible conditions with old fashioned cutters. They had the odd holiday I
remember about four of them. May be there were more. But they were far from
luxury.
My mindset wrongly, was I would never go blind. I had
suffered thousands of painful injections, electric shock treatment other things
called electros which was humiliating rather than painful, life changing stays
in hospitals and learned at a very young age how to be an adult and care for
others.
My Mum was so much older than me. Forty years older. She was
never well as long as I knew her. She would pass out and I would have to get
her pills and water wait until she came around and help her to take her
medication as well as help her to a chair. I will never forget the time in the
middle of a very busy path, she passed out oh, there was blood everywhere. I
was about four. I was scared stiff. But thank God she came around as we didn’t
have tablets. There was me and her. And that was how it was us against the
world. Literally. As the UK medics were very against us as were some, parents
at my school passing those negative feelings down to their children. Their
children were blind, so I should be. That was the general perception. Whether
that was the case or they had to fight back as they weren’t as strong as my Mum
or selfless in trying to find help. Or was it help? Some would say yes. As I
could see to walk down the isle on my wedding day, I saw my baby for a year of
his life and I visited countries and saw what they had to offer. But the down
side was, I never learned Braille as a child, as the Doctors in Russia believed
if you think blind, you are blind… crazy but I do understand that Idea as well.
When that day came I woke up totally blind, I can’t ever put
into words just how horrific that was. My first thought was how on earth I
would cope with my baby? I guess for those who were blind, they coped, so why
not me? Well of course I could now, as I have learned how to live as a person
without sight, but in those days, I didn’t know any people who were partially
sighted, let alone blind. I knew of no organisations apart from one huge one in
the UK and I can’t tell you sadly how unhelpful they were at the time. Again,
you have to know the lingo, what to ask for? how to say it even.
I couldn’t even phone for help as used to look at phone
numbers in my phone book. how would I put up my babies’ bottles/? Change his
nappies? Know what he was wearing and bath him safely. Let alone what came in
the next few years. School, teaching him how to read and write. Getting him to
school.
But first things first, how to live, how to breathe, as
every single breath I took, was so very painful. I just didn’t want to do it. I
didn’t want to go through the hell of waking up. I slept may be a couple of
hours with pure exhaustion. I was on my own with my baby as my ex Husband
worked so hard day and night. Then on his day’s hours off, he played. I guess
he didn’t understand my pain. It was a shock for him too. As I did everything
in the house for him. I did my best to look good when we went out and well, I
was what they call normal.
I was grieving for the loss of my sight and for my parents
who died just after I went blind. I was grieving for something I had lived for
all of my life.
I was in the press every couple of weeks. I did radio
interviews and live broadcasts on TV as well as a five-day series and it was
all to do with the fact I could see.
My world came crashing down on me and that was before I
would have to learn how to wash clothes, how to sort the colours out, work the
washing machine. How to pour a cup of tea without scalding myself.
I just felt so alone. And this is one huge reason I write
now days. I get so many emails saying they too felt alone until they found my
blog page, I don’t want anyone to go through the hell I did. Even on a smaller
scale, as my small is your huge problem. Pain.
If not for my baby, I would have just shut down. The worst
thing was just having no one to talk to. No one who understood. And what made
it worse, boarding school taught us to hide our feelings. Smile on the outside.
Never tell our parents what went on. We even had to chant on a Friday morning
in assembly. “Today is Friday, go home and on Monday come back cheerfully not
tearfully, but cheerfully.”” As I used to say those words, they were that to
me. Words. Words that stuck in my throat. We said those words until we left
that school. Then of course for most the next school we weren’t all home at
weekends.
My Mum hated me being away, but because of my treatment in
Russia, I spent a lot of time away from school. As each visit was four weeks,
unlike the first visit which was seven weeks, second six, and third five, it
got down to four weeks, and in the end as an adult, ten days of treatment. They
learned how to make the serum more concentrated. I also had to go to London
hospital the largest then in the UK as no other hospital would see me. Even as
a small child when I got sand in my eye, no Doctor would treat me. It took a
letter to and from the queen to allow me to have an eye Doctor, it was six
hours away from my home. Again, more money for my poor parents to pay out. More
time away from school and taking my Mum away from my brother. Luckily, he had
my Nanna and my Dad when he wasn’t working, but when he wasn’t working he slept
as he did 17 hour shifts seven days a week. So, it was tough I’m sure for him
too.
Well the fact was, I did survive, but it was pure hell.
Mainly because I didn’t have help and I wasn’t prepared. It wasn’t going to
happen to me, was it, and if it was, I never imagined it would be overnight.
That was the problem. The speed of it. I was reading tiny print the night
before, everything was fine, and then my eyes opened the next day, bam. Gone
nothing. I thought it was the end of the world, seriously. Then I heard a bus
outside. The birds sang. But why wasn’t there any light? I put my hand on my
phone that was on my bedside table I could thankfully dial without looking.
This was taught by self-teaching at boarding school. In those days, the schools
I went to had very dim lighting. Yes, they were meant for kids with sight
problems, but it may have been nice if at least where you needed to make a
phone call, was lit up? Well I guess if they weren’t, I wouldn’t have learned
how to call without looking. I wonder if that was the intention of our schools?
Somehow, I doubt it…
My Mums number was the only one I knew off by heart. See, I
relied on my vision so much. Little did I know that my words to her would affect
her so much, little did I know that she would know before me that I had gone
blind. As it took her silence when I asked about the dark weather, for me to
realise no matter how sunny it would be in the future, I would never see it
again.
Little did I know
that after that call, I would lose my darling parents to which I still today
twenty years later, still have tears for daily.
Even now writing this, unlike yesterdays blog the above
link, I have burning tears. It was by far the worst time in my life. I wouldn’t
want this for you. I receive emails from people saying they are so afraid to go
blind. Well let me tell you, the thought of it is a prison sentence. If you are
prepared, if you have some sort of support at least numbers to call and know
how to call them, example on tape/Dictaphone, then you are more than half way
there. Never think because you have perfect sight, you are ok either. One
hundred people in the UK, start to lose their eyesight every single day.
Some through accidents go totally blind. A nose bleed can
make you blind. A stroke, diabetes and so on. I was speaking with someone last
week who was going to work. He had a crash in his car. He’s now blind. A lady
in the news of late was hit in one eye by a golf ball. She’s lost the sight in
that eye now. it’s just fact, just life. but if you have an eye disease that
could make you blind one day, then please just be prepared, know you are not
the only ones out there.
The internet rules
our lives a lot now days. People communicate through computers. We use them for
on line shopping, emailing, social networking and our jobs. Even those who
don’t work in an office, a lot of us need our computers to input data for
example. We look at screens on our phones. It’s a totally different generation
now days even to when I went blind twenty years ago. So, we are not talking
about the olden days like my Son speaks of… he thinks I was around when the
dinosaurs were on earth.
I learned one thing as far as education at my school. That
was to touch type. I go on about this to so many people. Please. Learn to touch
type.
This is where you use all your fingers on the what is called
home keys. Your thumbs are used to press the space bar. So, your first pointing
finger on your left hand should be on the letter F. Second on the D. third on
the S and forth your little finger on the A. Your left pointing finger can go
slightly to the right to hit the G, and then your right four fingers. Pointing
finger on the letter J. second the K, third L and forth; And with your right
pointing finger, move to the left to hit the key H. That is how you start just
hours I spent at school pressing the same key, over and over again. JJJJJJJJJJ
J J J and J. then next ten minutes FFFFFFFF F F and F. why I used to ask. But no
one told us why this was important. To get our fingers strong enough to get the
feel, but no one explained that to us back then, and those days, we didn’t have
lap tops. We used old fashioned typewriters. When you have learned those
letters then you move certain fingers up and down, but each key has one finger
or each finger has its job to find certain keys. I can type fast about 120 to
130 words per minute and my Husband is faster than me. And both of us are
totally blind. So, I know it’s possible.
If you learn the
basic of Braille, you will always know what tablets are in your cabinet. You
may even receive birthday and Christmas cards in Braille as you may not know
anyone now who is blind, but you will I’m sure in the future.
If you have an eye disease like mine, Retinitis pigmentosa,
you may be doing everything you can to avoided people who may reflect who you
may be one day. I’m in groups on line with people in who have RP. The admin
bless them are always having to ask people to describe pictures as our screen
readers, I use Jaws, this means every letter or word I type, is read out to me.
So, the software which costs a fortune, reads letters that were put in by
typing, but won’t read pictures of texts, so pictures of words. It also won’t
read photographs. Though FaceBook, are now describing photographs, but their
description is quite primitive! For example, it may read (Picture one dog,
person glasses. One tree) and that is it.
Now if you are lucky
enough like me to have a great friend, or, friends, then they may give a
totally different description. For example. (A girl with sunglasses standing
under a beautiful tree in pink blooms, her dog is sitting next to her. He’s
golden with his tongue sticking out. The tree, looks like a magnolia tree, they are standing
near a river with loads of pine trees behind and the sky is a beautiful colour
of blue. She is wearing a pretty yellow dress)
Sadly, technology isn’t that advanced but we are getting
there and of course nothing beats actually seeing a picture for ourselves. But
in the groups, I’m in, it’s surprising just how many times people who also have
RP, don’t bother describing pictures. So, leaving a huge chunk of readers out
of the conversation.
I’m in a writing group that does the same, so I can never
join in the daily fun as they put it, but I expect that in a writer’s group.
Sadly, just as I don’t always think of every disability, they don’t either.
It’s called being human. But in a group where people are suffering or dealing
or even coping with their vision, what is left, one would hope that they would
think of those who are further down the road than them. As we are probably
going to be there for them when they need help.
So, fast forward so many years. I had to learn the white
cane. How to use it that was, after I got over the fact of the shame. Why do we
feel shame about using a white cane? I understand the fact that I went through
pain of accepting I needed one, that was excruciating, but the embarrassment?
Okay, you don’t fit in, you look so different. But you are out there. Doing things,
you couldn’t do before. I promise the first time you get from A, to B, on your
own using a white cane is the best feeling in
the world. Even if you walk with someone, take the pressure off them by
using your cane. The knowledge that you probably won’t fall down or trip up a
step again is amazing.
So, your partner is ashamed of you using it? Talk to them.
Tell them how you feel. Ask them do they want you to be a prisoner? Most of
them will say you don’t need one, you have me. Yeah, great, but not always and
may be not forever. And despite all that how good is it to go out when they may
be at work. To say you have picked up their prescription, giving them one less
job to do. You run out of bread, you can go and get it.
But to get from the chair to the shop. Hmm. That is where
you need to be strong. To fight. Even now I have to go out with my dog in the morning
if we are on our own. If I think about it, I get so anxious. So, it’s before
eleven when Waggatail and I venture out. My dream is to live in a village so I can
go out every day to little places like a coffee shop, the bakers, the fruit
shop. Rather than one big awful shop. Living in the city isn’t for me long
term.
After a year of using the white cane. I had to move onto a
guide dog. Firstly, I had to have a white cane as I really was affecting my Son
as he was worrying about how I was getting home. Bless him, he never thought
about how I was picking him up. He was three when he went to nursery school for
half a day. There were times when I contemplated staying hanging around the
school outside of the playground and just waiting as when he went to nursery
school, he was only there half a day. But there were no seats and it was for
about four hours. But the challenge of getting back home without a white cane
was hell on earth. How I did it I will never know. It was a fifteen-minute
walk. Crossing a big road and three small ones. Where to turn and when? Well nasty
narrow-minded parents passed it onto their children that my Sons Mummy was an
alcoholic. That was why I walked slower than them. So, I had to get cane
training. Then kids made fun of my boy pretending to walk into walls using
anything to represent a cane. So, I applied for a guide dog. Surely, they would
except him if I had a dog? And they did. At last. And it took to get a guide
dog before the parents would also accept I was blind. Suddenly we were popular.
And I have to say, a guide dog is amazing. Especially in a school environment
where cars are parked, walls separate different parts of the playground and
queues of parents stand outside different doors/entries to the school. Out of
so many doors too, which one to go to to collect my child? Well once a dog has
learned, they will take you to that one. A white cane can’t. using a cane, you
have to feel the edge of a building, well when there are bodies of parents
standing along the sides of the building, then you can’t use your white cane.
It took until I met my now Husband to learn what I know now.
he has taught me so much and since being with Hub, I have met or been reunited
with friends from our first school. Where we played as blind and sighted kid. Where
we are all now blind. Where we still all are teaching each other what we have
learned. Keeping up with all the technology out there. Talking about going to
the cinema
Using the audio
earphones that are there to tell us what is going on when it’s not obvious to
the sounds and going to the theatre being fortunate in the UK to have live
audio description where someone again via earphones lets us know all about the stages
setting. And facial expressions.
My Husband has taught me how to listen. I can now hear cars
when they are parked I hear some kinds of trees. I hear walls or buildings. I can
even tell when there is a gap and where to turn because of this. I have learned
to see through the souls of my feet. To sense where I am going. And so on. He even
taught me how to approach and leave an escalator/moving stair. Coming off those
I used to do a comical dance. Now, when it goes flat, I didn’t even know it did
until some years ago, I lift the front of my feet go onto me heals and then you
never trip up. You only lift them a little so you can still just about feel the
floor with the front of your feet. Also, when walking, if you walk heal to toe,
you won’t trip up. If you are flat footed or walk toe to heal as I did, because
everything you see comes from the front, right? Wrong…
I can hear the water pouring into a cup and tell when it’s getting
close to the top. This isn’t brilliant as in I’m clever, it’s knowledge that
has been passed onto me from one who knows. And it makes life so much easier.
So, you don’t want to go for a walk, you don’t want to visit
entertainment places. You are comfortable in a chair. I hear you. I was like
that. But I had to move for my Son. You don’t have a child or anything to live
for? you may not now, but around the corner there is someone waiting for you. You
have new friends out there. I guess you have to ask yourself two questions 1,
how do you see yourself in two, five, or ten years? And 2, if you right now are
your twin sister/brother who you loved very much, what would you tell your twin
sitting in that chair. You would want
the best for them as I do for you.
Getting from A to be is personal. Everyone has to do it
their own way. In their own time, as long as the fear of blindness is lessoned
by knowledge. I can tell you once I was over the massive pain which took me so
much longer than it would for so many people, I do more now than I did back
then. I have a clean house. Gardening isn’t our thing, though I know of blind
people who are amazing in the garden. But touching slugs’ worms’ spiders isn’t the
best thing for my nerves, so I leave that for our gardener, though Hub does
keep our roses good. Though you can imagine the thorns are a nightmare. Put thick
gardening gloves on and you can’t feel the enemy. Put thin ones on you get
hurt, but, hey, you have nice roses…
We don’t decorate, though I used to when I was partially
sighted. Now I get others in to do that. We shop for everything, we do our own
banking, we cook, iron wash hangs our washing out, I decorate inside and out
for Christmas, including climbing ladders to put out our lights outside. Okay,
one year I had our lit up angel swinging side to side on her head… And? Haha.
using kitchen machines are becoming more of a challenge now as most items are
visual as in flat screen display. manufactures out there, please think of us
when you are inventing?
Knowing the colours of our clothes is a challenge but it’s
possible. There are some great technical things out there at the moment
including those buttons I was telling you a few weeks ago where you use your
iPhone and sewn on and, stuck on buttons. Apps on the iPhone make life easier. Like
Tap Tap See. Be My Eyes and so on. The iPhone is the best thing to have been
invented. But it came because the founder had a relative who was blind. Now
sadly the founder has died, I hope the new owner will continue the great work
that was started. See none of these things were out when I lost my sight. So, we
are in a much better place, but we need to use our tech with our eyes closed so
we are able to do what we may need to in the future, and what is ten minutes
per day to us? It’s not even a coffee break. That is all we nee to do to
practice.
I hope this blog has filled in the gap between the time when
I was totally lost to when I was found and I hope with research one day I can
say. “I once was blind but now can see”
© Fiona Cummings
No comments:
Post a Comment